Alliance VITA denounces the inappropriate endorsement of euthanasia by French complementary health insurance companies and calls upon their duty of discretion in view of the potential conflict of interest.
On September 7, 2022, the 43rd Congress of the “Mutualité Française” (French Complementary Health Insurance Companies) held a forum entitled “Choosing your end-of-life: the ultimate freedom?” Participants included Jean-Luc Romero, the honorary president of ADMD, a Right-To-Die association, François DAMAS, the head of ICU and member of the ethics committee of the Citadelle regional hospital in Liège, Belgium, and Matthias SAVIGNAC, the President of the national complementary insurance company for teachers, the “MGEN” (Mutuelle Générale de l’Éducation Nationale).
Previously in July, an IFOP survey entitled “Views on the End-of-life in France” was conducted for the MGEN which attested position advocating euthanasia in an End-of-Life Manifesto. This manifesto is similar to the appeal for “active assistance in dying” made by Thierry Beaudet, MGEN’s former President. Thierry Beaudet now President of the “EESC”, (Economic and Social and Environmental Council), is responsible for organizing the upcoming citizens’ debates on the end-of-life.
While these health insurance companies claim to have an essential role in healthcare, and in contributing to the management of old age and autonomy, questions are being raised by their open endorsement of euthanasia or assisted suicide, under the pretext of a “right to choose a dignified end-of-life”.
Members pay their healthcare insurance to be sure that their healthcare costs will be covered, and this becomes crucial when they are most vulnerable, whether they are elderly, sick or at the end-of-life. Even the title of this 43rd Congress which advocates aid in dying is incompatible with mutual aid and solidarity, and undermines the trust between caregivers and patients, which is founded on the ban to kill.
Isn’t it obvious that this so-called “freedom” to choose death, promoted by some public health authorities, inevitably becomes the “duty to die” for the most vulnerable, the poorest, and the most secluded individuals?
Alliance VITA spokesman’s Tugdual Derville declares: “Beyond the standpoint in favor of dignity and individual freedom, we cannot help but wonder how much money insurance companies would save if euthanasia became legalized. The confusion and worry that such speeches cause for their members should not be underestimated. At a time when the healthcare system has undergone upheavals, coupled with an obvious conflict of interest, insurance companies should consider their duty of discretion on the end-of-life issue as an obligation. »
This is why Alliance VITA is calling on the government to ensure that organizations involved in social protection maintain a neutral stance on this very sensitive issue and that the EESC, as organizer of the public debates on the end-of-life, remain impartial.
On June 24, 2022, the U.S. Supreme Court overturned the case law decision of Roe vs. Wade which established constitutional federal protection for what has come to be called the “right to abortion.” The legal impact of this reversal means returning to the legal status which prevailed prior to Roe vs. Wade’s enactment in 1973. This means it will be up to each of the 50 states to legislate on abortion unless the US Congress passes a law at the federal level.
The Supreme Court’s decision rules on the constitutionality of a 2018 Mississippi state law https://law.justia.com/codes/mississippi/2018/title-41/chapter-41/gestational-age-act/section-41-41-191/ which sets abortion deadlines at 15 weeks of pregnancy, except for medical emergencies or severe fetal malformations. In December 2021, oral arguments were held for both sides: the Mississippi State Health Department represented by Thomas Dobbs, and the Jackson Women’s Health Organization, the only abortion clinic in the state of Mississippi.
Law or jurisprudence?
In many countries, including France, abortion is regulated by legislation voted by Parliament. In France, the Parliament recently extended abortion deadlines from 12 to 14 weeks of pregnancy. Alliance VITA’s website provides an analysis of the abortion laws in this country.
In the United States, the Congress, consisting of the Senate (100 seats) and the House of Representatives (435 seats), has yet to enact a legislation to forbid or restrict abortion.
Recently, the US Senate was unable to reach a majority vote for a bill passed by the House of Representatives. The bill was meant to codify the case law established by Roe v Wade and the 1992 decision in Planned Parenthood v Casey. The latter consolidated the 1973 Roe vs. Wade decision while simultaneously changing the criteria according to which a US state can regulate abortion
What Roe vs. Wade Stipulates
In Roe vs. Wade, the US Supreme Court ruled (7 – 2) that the U.S. Constitution protects a woman’s right to choose to have an abortion and specifies that unduly restrictive state regulation of abortion is unconstitutional.
“Jane Roe” is an alias name used by the plaintiff, Norma McCorvey, a Texas woman pregnant with her third child, and who wanted to abort in 1969. Henry Wade was the Dallas County District Attorney at that time when Texas law restricted abortion to life-threatening situations. The Roe v. Wade decision was reached according to two main legal elements.
The Supreme Court ruled that although it was not explicitly mentioned in the Constitution, a woman’s right to choose whether to have an abortion, could be considered to fall within the “right to privacy” under Section 1 of the 14th Amendment.
The Due Process Clause of the same amendment does not explicitly state that citizens have a right to privacy either. It specifies that “No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws. »
Adopted in 1868, this 14th amendment granted citizenship and equal civil and legal rights to all citizens, regardless of race or status (both to former slaves and free men).
In Roe vs. Wade, the Supreme Court ruled that the states could have a legitimate interest in restricting abortion including protecting the mother’s health and protecting the prenatal life of the fetus. To determine when the right to abortion would be without limitations, and when the state’s interests would be compelling enough to outweigh the woman’s right to choose, three standards of strict scrutiny were established:
the burden of proof for invoking such limitations lies with the state,
there must be “compelling state interest” in regulating abortions,
and it should be pursued in the narrowest possible way”.
Since the right to have recourse to abortion was considered as a fundamental right, the laws governing it had to be assessed against these strict criteria.
In practice, the judgment used the criteria of the trimesters of pregnancy to decide whether the state’s law could be upheld. State law could not make any restrictions in the first trimester, but it would be possible during the second trimester. In the last trimester of pregnancy, possible state restrictions were based on health issues and medical emergencies for women.
Acknowledging the Viability Test, Planned parenthood vs. Casey.
In 1992, the Supreme Court adjusted the trimester framework, asserting what it considered as the 3 main conclusions of Roe vs. Wade:
The mother has a constitutional right to abortion prior to the viability of the fetus, this right cannot be unduly interfered with by the state (known as “undue burden”).
The state has the right to restrict abortion when the fetus is viable (“fetal viability”).
The state has a legitimate compelling interest from the beginning of pregnancy to protect the mother’s health and the life of the fetus.
Previously, in other Supreme Court cases, one of the arguments invoked for hesitating to overturn Roe v Wade was the respect for precedent or “stare decisis“.
Analyzing state legislation according to the trimester-based framework was replaced in favor of a more flexible medical definition of “viability analysis”, offering the possibility of modifying the date of viability according to the medical knowledge.
Moreover, this judgment modified an important point since the criterion of strict conditions for analyzing state abortion laws legislation was replaced by “undue burden”. As a result, the ruling upheld the provisions of the Pennsylvania statute which required the pregnant woman or the parents of minors to sign an informed consent at least 24 hours prior to the act, although it negated the necessity for a woman to inform her partner.
Subsequent decisions rendered by the Supreme Court have further developed the concept of undue burden. In 2020, a Supreme Court decision June Medical Services LLC vs. Russo, reaffirmed that “many restrictions that did not impose a substantial obstacle were constitutional, while the restriction that imposed a substantial obstacle was unconstitutional.”
Conclusion
As evidenced by the number of various cases presented to the Supreme Court, the US state abortion laws have undergone many revisions since the initial vote of Roe vs Wade in 1973. Mississippi’s abortion law, the subject of the Court’s latest ruling, and the Texas “heartbeat” law voted in September 2021 are only two examples. In any case, it is difficult to compare abortion laws in the US to those in France since the legal systems are very different. Moreover, the US debate on abortion is still very fierce, with political standpoints resolutely divided into two camps. In France, as in the WHO, laws are continually being pushed in favor of extending abortion, therefore such discussions are more biased and challenging. Alliance VITA’s website recently analyzed the WHO’s ideological tactics to push abortion. Implementing a genuine abortion prevention policy for an act that is not trivial, that many women would prefer to avoid, is what is urgently needed.
For Alliance VITA any abortion is a personal tragedy and nothing to be celebrated. The Court’s decision to overturn Roe vs Wade should encourage each state to develop alternatives other than abortion with genuine abortion prevention policies and by offering support to pregnant women in need.
PRESS RELEASE – September 23, 2021
Alliance VITA’s Response to the 2021-2024 Palliative Care Plan
Alliance VITA commends the recently announced plan in France to develop more palliative care but also calls for the utmost vigilance regarding end-of-life issues.
Promised last April by the French Health Minister while the MPs were debating a bill to legalise euthanasia, this long-awaited plan intends to “guarantee” that palliative and end-of-life care will be made universally available throughout France.
For Alliance VITA, this goal is still a long shot away. Palliative care is still unavailable for 2/3rds of the patients who need it, due to lack of resources and 1/4th of French departments have no palliative care units at all.
The government has made a significant commitment by allocating €171 million to develop palliative care units throughout France by 2024. This includes increasing the number of hospital beds specialized in palliative care, and already in a priority move, 5 million € has been allocated to reinforce mobile teams this year. However, the shortage of caregivers puts at risk these targeted objectives. Creating a university course in palliative medicine is only worthwhile if palliative care jobs are created and filled.
The idea of better involving citizens, allowing them to exercise their rights and control their end of life is not to be opposed, unless there is an underlying, insidious push towards legalizing euthanasia.
As spokesperson for Alliance VITA, Tugdual Derville declares: “Our SOS End of Life listening service and the widely distributed Advance Directives Guidebooks show our commitment to promoting palliative care and fighting against unreasonable therapeutic obstinacy. As a member of the collective movement “Relieve Suffering Without Killing”, Alliance VITA keeps a watchful eye on the way every individual is treated until the end of his life, especially now, prior to the up-coming elections when there is intense political pressure to legalise euthanasia. The human tragedies which affected too many people during the pandemic highlighted the utmost importance for families to help their loved ones until the end of life. The Minister’s announcement to make Midazolam more widely available is also alarming since caregivers have warned of inadequate training for administering this potentially lethal sedative and the lack of genuine collegiality. Such conditions could easily veer towards euthanasia. To make end-of-life care more human, relatives and caregivers must join forces and work together to make every individual’s dignity inalienable until the very end of his life. »
Together with the collective group “March for the Children”, Alliance VITA participated in an emergency press conference on June 18, 2020 in front of the French Health Ministry to denounce the government’s obstinate attempt to push through the bioethics bill in an extraordinary parliamentary session to be held in July.
Caroline Roux, Alliance VITA’s Assistant General Delegate declared:
”We are here to denounce the government’s obstinacy to push through the highly controversial bioethics bill by adding it to the parliament’s agenda in July’s extraordinary session. Considering the bioethics bill as a national priority when we are still recovering from a crippling health crisis is diametrically opposed to what this country urgently needs.
We can attest that the crisis had a serious impact on the most vulnerable
This crisis was an intense period for Alliance VITA with calls to our listening services more than doubling: assisting pregnant women in grievously precarious conditions, and providing support to the elderly and those facing illness, disability, loneliness, end of life and bereavement.
The confinement period revealed worries about unemployment, the need for a social assistance particularly for people in a precarious situation, and for family ties.
Along with many of our fellow citizens, we praise the dedication of healthcare workers; but we also lament the flaws and deficiencies of our healthcare system, which is crying out for reform.
During this period we have all become more aware of our vulnerability, as one of life’s inherent conditions, both for human beings and for the environment. We are now presented with an opportunity to implement a responsible ecosystem which is first and foremost committed to protecting human nature. The priorities for France need to be redefined to focus on serving the common good.
This bioethics law could put future generations at risk
It’s a headlong plunge towards increasingly artificial procreation techniques, which questions children’s rights and parent-child relationships.
Pressure is mounting for future generations to use selective measures, with the proliferation of prenatal diagnosis tests, which may lead to genetic discrimination and further ostracize those with disabilities.
This bill irreversibly crosses the red line on human genetic modifications, by opening the door to genetically modified embryos and creating chimeras mixing animal and human cell lines.
Considering the virulence and the uncertainties still surrounding this virus, which paralyzed the entire planet: it would appear arrogant and alarmingly foolish to play ‘god’ with genetics.
We appeal to our government and our parliament to demonstrate their sense of duty and responsibility. They cannot act innocuously and pretend that nothing has changed. We have entered a new era where the world is more vulnerable.
There are urgent economic, social and health issues to be addressed this summer.
Priorities should be respected, and parliament should be granted an adequate time allowance to work on reforms, which are vital for French citizens.
This is why we call for this bioethics bill to be withdrawn. “
Alliance VITA denounces the recent governmental gambit aimed at pushing through the highly controversial Bioethics bill in France. Along with “March for the Children”, Alliance VITA calls for action to have the bill withdrawn from the extraordinary parliamentary session.
On June 16th, the French government published a decree convening Parliament to a special session on July 1, 2020, to continue examining various legislative texts, including the Bioethics bill. A recent IFOP survey carried out by “March for the Children” revealed that over 70% of the French prefer to have the bill suspended or withdrawn, and focus primarily on managing the socio-economic emergencies generated by the COVID-19 crisis.
Caroline Roux, Alliance VITA’s Assistant General Delegate asserts:
“By convoking parliament to an extraordinary session to examine the bill, the government is yielding to the ideological pressure of a small minority. Only two days after French President Macron addressed the nation with promises ‘to rebuild an economy that is strong, ecological, sovereign and unified’, the government immediately turns its back on the real needs and expectations of its’ citizens, just to push through a bill on this highly controversial issue. The government cannot act as if nothing had happened. The world before this coronavirus crisis and after cannot be the same. The French rightly seek a comprehensive overhaul of the nation’s priorities to better serve the best interest of all its’ citizens. For the majority of French citizens (62%), the push to re-examine this particular bill in an extraordinary session is perceived as an electoral or diversionary tactic related to the COVID-19 health and socio-economic crisis. The overwhelming majority is more concerned about pressing issues such as employment, purchasing power, environmental protection, etc. Therefore, Alliance VITA is calling for the Bioethics bill discussions to be withdrawn from the upcoming parliamentary discussions. “
The recent update by the French High Authority for Health (“HAS”) on continuous deep sedation until death coupled with the announcement that Midazolam will soon be available on prescription in French pharmacies creates great confusion on the way to use this drug in a home setting for individuals at the end-of-life.
Measures Taken by the “HAS”
After the “Claeys-Leonetti” end-of-life law was voted in 2016, the French National Authority for Health (HAS) began evaluating the guidelines for pain relief, including those for the rare cases for “implementing continuous deep sedation until death (CDSUD)”. Their “care pathway guide” for CDSUD was published in 2018 to assist in the decision-making process on implementing this sedation.
This text has now been updated to specify the modalities for administering drugs, including off-label* drugs, to sedate patients at the end-of-life by “appropriate, deep, transient or continuous sedation until death”. No drug in France has an officially approved indication for use in sedative practices. Thus, by publishing “analgesia for unbearable, resistant pain and sedation in adults: drug use in palliative care until the end-of-life” the “HAS” is basically endorsing specific drugs for sedation as well as recommending their methods of use.
The Midazolam which is currently restricted for use in hospitals, is the recommended first-line drug for sedation.
On February 10, 2020 in a press release issued by the “HAS”, and based on its recommendations, it requested that the government authorize pharmacies to dispense these drugs to general practitioners who care for patients at the end-of-life in their homes.
* Marketing Authorization (MA) refers to the properties of a drug and its use. It is issued with a Summary of Product Characteristics (SmPC) and an informational leaflet for the patient.
What is Midazolam?
Midazolam, more frequently referred to as Hypnovel®, its old trade name, is the only benzodiazepine currently available on the market with an extremely short duration of action. Benzodiazepines are prescribed in psychiatry, mainly for its anti-anxiety effect, in neurology for epilepsy, in anesthesia-resuscitation for sedation, in addictology for alcohol withdrawal … Well-known drugs in this class of benzodiazepines include Lexomil®, Xanax®, Valium®, Rivotril®…However one of the drawbacks for these drugs is their duration of action, with elimination half-lives ranging from 7 to 10 days. Midazolam has the advantage of being eliminated rapidly, with a half-life of approximately 2 hours, thereby minimizing the risk of accumulating the doses. This is an important advantage for balancing drug dosage and treatment, especially in elderly patients, or those with major organ deficiencies (cardiac, respiratory, hepatic, renal…) symptoms which often occur at the end-of-life. In these situations, it is appropriate to prescribe Midazolam. It could even be recommended, whether at the end-of-life or not, to treat anxiety, or to alleviate various anxiety disorders. Thus from a pharmacological point of view, general practitioners should be able to prescribe Midazolam. Up until April 30, 2013 it was dispensed in pharmacies under the name of Versed®.
In addition to analgesic treatment, based on professional agreement, the French National Safety Agency for Medicine and Health Products (“ANSM”) recommends the off-label use of Midazolam for its effect of amnesia, when undergoing painful procedures which may provoke anxiety.
Today, this product has only received marketing authorization for anesthesia. However, the Health Ministry has announced that it intends to approve Midazolam for sedation, which will create an amalgam between this product and deep continual sedation until death.
Continuous deep sedation until death, an exceptional last resort measure
Before the law was voted, “deep and continuous sedation until death” had been previously practiced by professionals in rare cases, for circumstances of unbearable, resistant suffering which could not be relieved by any other means, and when faced with a short-term vital prognosis. Basically, sedation alters the patient’s consciousness and thus severs any further relationship. The sedative doses may be proportional to the intensity of the symptoms and reversible. Professionals prefer to use, when it is possible, painkillers which allow patients to remain conscious. On the contrary, sedating a patient whom we know will not wake up is difficult both for close relatives and caregivers. The official French National Authority for Health “HAS” text rightly points this out and recommends a specific support for the various participants concerned to ensure that these situations are not trivialized, and must remain a rare practice.
The law provided that sedation request could be initiated by the patient himself. When stopping or restricting care, including nutrition and hydration, there is a risk that this practice could veer towards euthanasia. Alliance VITA takes part in the movement “Relieve Suffering withoutKilling” which also brings together health professionals, and together they denounced this gray zone during debates for revising the law. Some ambiguities still persist despite the recommendations by the “HAS”.
What the Law Stipulates
France passed a law on April 22, 2005 which allowed families and doctors of terminally-ill patients to withhold life-sustaining treatment. However in 2008, following the case of Chantal Sébire, suffering from an incurable facial tumor, and who requested assisted suicide, this law was revised and the Code of Ethics was modified. Thus article 37, (§III) of this law concerning patient rights at the end-of-life states: “(…), even if the patient’s suffering cannot be assessed due to his cerebral state, the doctor may implement treatment to relieve the pain of the person, in particular analgesics and sedatives (…). He also ensures that the patient’s relatives are informed of his situation and receive the necessary support. The principle of maintaining sedation and this article of the Code of Ethics were not explicitly included in the law of April 22, 2005.
The law of February 2, 2016 allows “continuous deep sedation until death” under very specific conditions: at the patient’s request to avoid all suffering and unreasonable obstinacy. According to the law on unreasonable obstinacy, acts of prevention, investigation, treatment or care must not be performed or continued if they are unnecessary, disproportionate or have no other effect than the artificial maintenance of life”. In February, 2018, two years after this law was enacted, the “HAS” issued recommendations concerning continuous deep sedation until death. The two-year time lapse prior to the “HAS” publication testifies to how difficult it is to evaluate these cases before implementing sedation, which must remain exceptional and cannot be trivialized.
Where does the confusion come from?
1 / In her letter addressed to the French Union of Liberal Doctors, the Health Minister, Agnès Buzyn equated administering Midazolam with deep and continuous sedation. This threatens to conceal its real usefulness and to use it as an “ordinary” medicine, whereas this type of sedation must remain exceptional. Due to the Claeys-Leonetti law of 2016, if Midazolam becomes more widely available today, we risk to be confronted with even more cases of hidden euthanasia.
2 / Already last December, a general practitioner from the Seine-Maritime region was accused of having involuntarily put 5 of his elderly patients to death with Midazolam, which was labeled as a powerful sedative reserved for hospital use. The product was obtained illegally from his wife who is an anesthesiologist. This legal case is difficult to assess, as the trial is still ongoing. The doctor stated that he wanted to alleviate his patients with this anxiolytic, not kill them. He explained that: “by using this drug, the intention was neither to accelerate the patients’ death nor unnecessarily prolong their lives. Strictly speaking, it was meant to help the patients to remain at home and for their families to remain as serene as possible, since this is always a difficult period.”
Will hidden euthanasia increase when Midazolam is dispensed to general practitioners?
There should be no cause and effect relationship; unless end-of-life support is reduced and sedation until death is practised. As long as the drug is used correctly, there should be an improved quality of care. However for patients experiencing pain, augmented by severe anxiety, the appropriate use of Midazolam may decrease the number of requests to end life, which are very rare and often associated with inadequate care.
The challenge is rather that of training doctors to use this product, and relying on genuine collegiality when establishing conditions for using it for sedation. It is the context of the Claeys-Leonetti law that is unclear and leads to confusion.
The vote for the first reading of the Bioethics law was held in the French Senate on February 4, 2020, passing by 10 votes (153 votes for, 143 against). Although we appreciate the attempts made to amend the draft law, it has not fundamentally changed.
The Senators have made one contradictory vote after another. In the end, this text is still unacceptable because of the serious injustices it inflicts on future generations by yielding to individualism and scientific technology. Ethics is supposed to protect human rights, life and human dignity but never before has a text on bioethics been so far removed from ethics. Nevertheless, all these new revisions could still be reformed during the second reading at the National Assembly, which is most likely to be held in April, although the exact date has not yet been confirmed.
Authorizing “ART without a father”, but health care reimbursement denied
The controversial subject of a number of discussions, Article 1, dealing with medically assisted procreation (the so-called “ART”) with a donor for female couples or a woman on her own, without a male partner, was finally adopted after considerable modifications. Some revisions previously recommended by the special committee were reintegrated, such as the criterion of medical infertility for heterosexual couples and the subsequent reimbursement for the procedures. On the other hand, the senators denied health care reimbursement of ART with a donor for single women or lesbian couples. The words asserting that “no one has the right to a child”, justifiably specified in the preamble to this same article, lose their forcefulness, when “ART without father” is made possible.
In view of these reforms for expanding ART, the senators have argued in vain to include a conscience clause for doctors and health care personnel who do not wish to be professionally involved in these procedures, regardless of the context. In addition, the national research infertility program, which was introduced by the deputies to study the causes and prevention of infertility, was abolished by the special committee under the pretext that it is not a legislative matter. Why not address the major health issue of infertility in its entirety, instead of focusing only on artificial procreation techniques, which are physically and psychologically burdensome for both women and couples? All the more surprising knowing that less than half of the couples resorting to ART have no child.
Nonetheless, the senators discussed the clause for double gamete donation and banned this practice. They also adopted an amendment to specify that only non-profit centers could be allowed to receive, store and freeze embryos. Previously, this stipulation had been deleted by the Senatorial special committee, which would have opened the door to the procreation market.
Gamete auto-preservation rejected
Article 2 for oocyte auto-preservation for women in the absence of any pathology, for procreation at a later date, by in vitro fertilization, was rejected.
The dilemma of lifting the anonymity for gamete donations
Another key measure hotly debated by the Senate was that of lifting the anonymity for gamete donations. The initial draft, approved by the National Assembly during the first reading, stipulated that the donor had to reveal his identity if the child requested it when he is 18. The Senators have amended this article to allow the donor the prerogative of whether or not to disclose his identity upon the child’s request. As a result of this significant modification, the so-called lifting of anonymity will not have much impact. This hypocritical situation is a ticking time bomb and extremely detrimental to the child.
Two maternal filiations denied
In the original text regarding ART requested by female couples, the rules to establish parentage purported to recognize both “women” as parents. The Senators rewrote this article and the establishment of either two maternal or two paternal filiations for the same child is no longer allowed. The woman who gives birth will automatically be considered as the child’s mother, while a distinction will be made for the other woman, who must file for adoption of the child. Unmarried couples who live together or who have signed a civil solidarity agreement (“PACS”) are now allowed to adopt, with less complicated adoption procedures for the second partner.
The issue of surrogacy, which had been discussed by the special committee, was raised again.
For children born abroad from surrogacy, the ban to transcribe the foreign birth certificates onto the French civil registry has indeed been maintained (after having been adopted by the committee). Nonetheless, the rapporteur, Muriel Jourda, filed an amendment to authorize the transcription of adoption rulings, without any reference to this unfair practice. For the record, in a recent case law, the Court of Cassation allowed the transcription in France for these birth certificates established abroad, despite the fact that surrogacy is a fraud against French law.
Articles 5, 6 and 7, relating respectively to transplants, donating hematopoietic stem cells and the consent requirement for persons under protective supervision, were all adopted.
Precautionary Principle for Bioethics Rejected
At the very beginning of the discussions, an amendment to include a precautionary approach in the law was rejected. The answer by the Keeper of the Seals, Nicole Belloubet is instructive: “the precautionary approach is both a system of assessing and implementing proportional and provisional measures in the event of serious and irreversible damage. However in bioethics I think we could endlessly question what constitutes a serious and irreversible attack; this would be difficult.” This is exactly why this bill raises voices of concern and why our opposition is justified.
“Recreational” genetic testing and preconception screening refused
The Senate also voted to delete articles 10bis and 10ter, which had been adopted by the Special Committee. Article 10bis, initiated by the senator and rapporteur Olivier Henno (“Union Centriste Group”) would have allowed “recreational” genetic testing. He had also tabled an amendment (article 10ter) to allow couples to have recourse to preconception screening “on an experimental basis“, meaning that both members of a couple could have their genetic characteristics analyzed, without any prior medical reason, to determine if they are “compatible” or whether there is a potential risk of transmitting a known genetic disease to their future children. Currently, preconception screening is very rarely practiced, only in cases where the family in question has a previous history of transmitting a genetic disease. The Health Minister, Agnès Buzyn, declared in support of deleting this article: “This would eventually pressure everyone into feeling required to have this kind of test performed […] It portrays the image of a society where DNA controls everything, where man controls his descendants, the delusion of having future generations unscathed. “
Creation of Transgenic and Chimeric Embryos Denied
Although less mentioned in the media, research on human embryos remains an important issue in this bill.
Article 17, which proposed creating chimeric and transgenic embryos, was finally rejected by the senators. Thus, combining human embryonic cells or induced pluripotent stem cells (IPS) with animal embryos is allowed. Alliance VITA has been a whistle-blower to denounce these chimeras, especially since the general population was largely uninformed, partially due to the ambiguous and changing vocabulary used by its promoters. The bill does intend to allow research on artificial gametes, but a Senatorial amendment specified that artificial gametes (created from reprogrammed human cells, called IPS) cannot be fertilized to create an embryo.
Time period extended to 21 days for cultivating embryos for research
On the other hand, all the requests for regulating or restricting research on embryonic stem cells or human embryos were rejected. The Senate has proposed extending the research period on human embryos to 21 days, which is a very advanced stage of development, in particular for the nervous system. The deputies had voted for a maximum of 14 days. The current law specifies a limit of 7 days, a major symbolic date, since under natural conditions this is when the embryo is implanted in the maternal uterus.
Refusal to Extend Pre-implantation Genetic Diagnosis (PGD)
The PGD-HLA refers to performing pre-implantation genetic diagnosis (PGD) with tissue typing for human leukocyte antigen (HLA) to screen for compatibility. Also known as “savior babies” or “savior siblings”, it had been deleted by the National Assembly then reintroduced by the special committee. It was finally confirmed by the senators, who denied the requests to outlaw this ethically controversial procedure, which has not been practiced since 2014. PGD-HLA consists in a double selection process for embryos created by IVF. First the embryo must be free from the disease affecting a family member, and secondly it must be genetically compatible, in order to graft the stem cells obtained from the newborn “savior baby’s” umbilical cord to his sick elder. In previous bioethics legislation, this procedure was approved with the stated objective of accumulating a stock of cord blood cells, to avoid this.
The Senate did however vote to delete article 19ter, introduced by the special committee, which proposed pre-implantation diagnosis to screen embryos from IVF for aneuploidies (PGD-A), meaning an abnormal number of chromosomes, and thus including trisomy. Already with PDG alone, less than 200 children are born annually with aneuploidies. The PGD-A technique would most likely bring further eugenic practices by screening embryos for non-hereditary and therefore unpredictable criteria.
Revised consciousness clause for doctors in the event of abortions for medical reasons
The Senatorial special committee deleted the specific conscience clause for healthcare personnel regarding abortion for medical reasons because it is already covered by the public health code for terminating pregnancy. Article L2212-8 states: “No midwife, nurse, medical assistant, or whomsoever, is required to contribute to terminating pregnancy for medical reasons.”). For doctors, however, the committee decided to maintain the measure in the governmental text, in alignment with the conscience clause on other abortions, which requires them to refer the patient to another practitioner. “A doctor is never required to carry out an abortion for medical reasons, but he must immediately inform the patient of his refusal and promptly refer the patient to other practitioners likely to perform this act.” The senators also voted to abolish parental authorization for minors and to delete the proposed 7-day reflection period established by the initial bill.
Deleting the one-week reflection period prior to having an abortion for medical reasons, in addition to giving up the parental consent for minors, leads to further trivializing an act which has serious human and psychological consequences, to the detriment of alternatives such as welcoming and caring for sick or disabled newborns and their families.
In Paris, on January 19, 2020, Caroline Roux, Alliance VITA’s Assistant General Delegate, spoke at the massive citizen protest movement against the bioethics bill, organized by “March for the Children”.
“If we are here today, braving the cold, some travelling from long distances, it is not to promote our self-interest.
We are here today to defend the most vulnerable, and a world where human biodiversity is welcomed as an opportunity.”
This bioethics law affects all of us, and it will have a strong impact on our future generations.
Just as we gradually become aware of the damage inflicted on the environment, this law is ruining the very first ecological principle: that of protecting human nature and human biodiversity.
Our parliamentarians are currently discussing ‘progress’ in relation to motherhood, fatherhood, disabilities and human life. It is essential to make a distinction between real progress, and discrimination and injustice.
Should we call it progress when paternity disappears behind artificial procreation techniques?
Should we call it progress when man’s role is just to supply gametes and when children are deliberately deprived of paternal filiation?
Should we call it progress to resort to artificial and overmedicated maternity, imposing hormonal treatments on women without any medical reason whatsoever? Should we call it progress to encourage women to have their oocytes frozen to achieve motherhood, an illusory promise which can never be guaranteed?
Should we call it progress to turn a blind eye to the violations of the law implied by the commodification of the body of foreign surrogate mothers?
Should we call it progress to “pinpoint anomalies” and to eliminate vulnerable people rather than welcome them and try to find treatments for them?
Some have attempted to limit our freedom of speech. There is no debate but intimidation instead. This is insufferable. And we shall not surrender.
Society will progress provided that paternity and men are respected, provided that maternity and women are respected, provided that differences and vulnerability are respected.
Human beings are not machines, nor objects with price tags, to be bargained or thrown away.
Should we call it progress when the human embryo – and at one time all of us were human embryos – is used as raw material for the lab, to be genetically modified, to create chimeras by combining its cells with animal cells, or even used to produce artificial gametes?
Should we call it progress when human integrity is no longer respected, and scientists are allowed to play God?
We request that the precautionary approach, which is rightly applied to the environment, be applied first and foremost to protecting the human being.
By blowing the whistle on these essential issues, we are pioneers.
We are pioneers for a world in which human beings as well as the environment are protected.
Don’t be mistaken. If our march started Place de la Resistance today, the idea is not to retreat. We shall go forward.
The government must stop this bill, which is against human dignity and human rights.
We ask our parliamentarians to stand firm and voice their opposition to this law which, as it stands, does not deserve to be called ‘bioethical’.
They have an enormous responsibility: for now, and for the generations to come. And it is our responsibility as well.
Your presence here today is a wonderful opportunity, as is the support of those following us all over France.
Regardless of the final results, we mustn’t forget that we are actors in our society. We shall not surrender. Our fight against injustice and discrimination will never end.
Progress means a genuine human ecology in bioethics.
Alliance VITA praises the court’s decision ordering to resume their censored campaign “Society will progress”.
Alliance VITA praises the decision of the interim relief judge of the Paris Court of Justice. Mediatransports stands accused of arbitrary censorship for stopping the “Society will progress” campaign and is ordered to post again the two visuals they had withdrawn on January 2, without any prior notice, and without even notifying the association.
Alliance VITA requests the second media network, Exterion Media, to resume immediately the campaign in full respect of the contract signed, otherwise the association will take legal action. Indeed Exterion Media received and followed an injunction from the Parisian mayor, Annie Hidalgo, to remove all three versions of the posters from the streets of Paris on January 3, 2020.
Tugdual Derville, Alliance VITA’s General Delegate declares: “This ruling is certainly a victory for Alliance VITA and for the noble causes we are fighting for with dignity. But first and foremost, it is a victory for the freedom of speech against a ‘thought police’. The words ‘paternity and maternity, very neutrally promoted in the posters, have been banned while at the same time the French are harassed with so many violent or consumerist visuals. This fact is a call to conscience and Alliance VITA intends to contribute to this call via its campaign and its unexpected chain reactions. “
In this regard, Alliance VITA denounces the fact that some anonymous twitter accounts, are used to denounce and censure. They have a real power of intimidation and are truly detrimental, as demonstrated in this campaign, to democratic debate.
On October 6, in Paris, Blanche Streb, Alliance VITA’s Research and Training Director, and Spokesperson for March for the Children, declared at the massive citizen protest against the Bioethics bill:
“Science has made us gods, even before we are worthy of being men.”
United together behind a common cause, we began our march at Edmond Rostand Square. And I have just quoted his son, Jean Rostand: a biologist, an academician, and a feminist activist ahead of his time. And he criticized the technician society that he could see developing. He was aware that mankind was going to be overtaken and left behind. And that’s exactly what is happening today.
Supply creates its own demand. Techniques for creating and marketing human lives are at a fever pitch, and we let them take control of our laws and of our thinking processes. And the guinea pig in all this is nothing less than the human being.
Several articles in the bioethics bill can be summarized as follows: as long as there is a market for it, everything possible will be done to meet the demand:
Genetically-modified embryos, 3-parent IVF
Artificial gametes
animal embryos which contain human cells
A law to intentionally uproot children at birth to make them grow up without a father
Concocting embryos with implausible filiations no matter the cost, only regarding them as raw material for lab work.
Behind these debates and amendments lies a truly transgressive opportunism.
The government itself is being overrun by the machinery it has created.
This bioethics law opens up the field of absolutely all possibilities. Some want to standardize quality control measures for human beings, to facilitate surrogacy arrangements, to allow post-mortem ART, to allow ART for individuals who’ve changed sex, while others are already suggesting having multiple parents.
This law has turned into a huge bioethics “fair”; which is not surprising. When one ethical principle is toppled, the dominoes start to fall one after another.
To our MPs responsible for drafting and voting the bill that President Macron has labeled “the text of all dangers”: you cannot deny there are unjust consequences for humanity and society, both now and in the future. Stop downsizing man. Stop reducing him. Stop reducing men to spermatozoids. Stop reducing fathers to a set of data that children can consult once they reach the age of adulthood. Stop comparing a pregnant mother who gives birth to children to a female companion labeled “intended mother”. Stop reducing human beings to a genetic bar code, to be screened in vitro to judge which lives are worthy of being lived or not.
You have a reductive view of man and you use his powerful yearnings to squeeze your ideology into a few articles of a bioethics law, which is fading away to nothing.
You are totally missing the point regarding the magnificence of mankind and human life, but believe me, one day mankind will reclaim its rights.
Tomorrow, voices will call out:
What did you do to my father?
What did you do to my mother?
What did you do to my brother’s embryo?
What did you do to my body?
What did you do to my fertility?
You promised us a child, by saving oocytes in the bank, by mortgaging our maternity, but 3 out of 4 of us women will mourn our empty cradles, because you lied to us, simply to make a profit from our bellies.
Ladies and gentlemen parliamentarians, in your temporary position of authority: a sustainable society cannot be founded on coexisting individual interests. A society can never become more humane if human nature and life itself are mistreated.
Ladies and gentlemen parliamentarians, a quote from Jean Rostand resounds for you: “Do not act like demi-gods when you are only little charlatans”.
The fundamental principle of non-commodification of the human body and human beings is not ‘for sale’.
We can’t turn gratuitous procreation into an assembly line, becoming more and more artificial and profitable. We must protect human nature and human biodiversity. Vulnerability must be qualified as one of life’s inherent conditions. We must never forget that a child is not a right to be demanded, but a person to whom life is given.
We stand here with aplomb and self-confidence to demand that the laws which affect all of us, be laws to protect those who are the most vulnerable and to lead society towards real progress for humanity.
Progress for mankind’s benefit and not a progressive tumor which enslaves mankind.
This bill challenges our conscience, our vision of the society we want to help create, our responsibilities.
Let no one turn a blind eye, since nothing that we will collectively lament tomorrow, will not have already been sown today.
Let us earn the respect of the generations to come, those for which we are already responsible.
It may be by understanding that “Every one of us is responsible for the others. And me personally more than all others” that we deserve to be men and women.
On June 18, 2019, the official statistics published for Spain, now classify it as the European country with the lowest fertility rate. Since 2008, the number of births in Spain has fallen by 40%.
Over the past 11 years (from 2008 to 2018), Spain has reported a decline in the number of births from 519,779 to 369,302. Moreover, in 2018, 20.6% of the babies were born to mothers without Spanish nationality.
The communiqué published by the Spanish Institute of Statistics (“INE”) stated that this “is partly due to a decrease in the number of children per woman”. In fact, the fertility rate (the average number of live births per woman of childbearing age) has reached its lowest point since 2002, falling from 1.31 in 2017, to 1.25 in 2018.
These figures are to be compared with the fertility rates in the European Union and in France, which were respectively 1.59 and 1.89 for 2017. In developed countries, for the population to reproduce itself at current numbers, the “total fertility rate” needed is 2.1.
In 2018, there were 5.9% fewer marriages in Spain compared to 2017. Over the same period, the average age for maternity increased by 0.1 to 32.2 years, while in France the average age is 30.6.
The percentage of mothers aged ≥ 40 has risen sharply in Spain: 63.1% in 10 years. This trend is consistent with the overall drift towards advanced maternal age in Europe.
Spain’s current decline in birth rate has been aggravated by an earlier downturn which began during the 80’s. Since 2015, Spain has reported a “negative growth rate”, with the result that the number of deaths exceeds the number of births.
On the eve of Father’s Day, Alliance VITA published the results of the IFOP opinion poll which clearly demonstrate that the French people are very attached to the role of the father. The overwhelming majority (91%) believe that the father plays an essential role in a child’s upbringing; 79% think that children who did not know their father are at a disadvantage; and 55% are opposed to using ART if it would deprive a child of a father.
Tugdual Derville, Alliance VITA’s General Delegate, comments:
” The revision of the bioethics law is nothing but a priority for the French (as shown by the opinion poll “The French and implementing measures after the national debate”) and yet the Prime Minister takes the risk to profoundly divide French citizens. Extending the French ART laws beyond cases of medically-diagnosed infertility would intentionally deprive children of a father, diverge medical care from its therapeutic role, and would turn the country into a sordid procreation market, incompatible with human dignity. By betraying his former convictions, the French Prime Minister, Edouard Philippe, goes even further than former president François Hollande. He is pushing us to march in the streets like the “yellow-vest” protestors, driven by the desire to protect the child from being deprived of any paternal reference point in his identity.In the long term, what do we gain by overturning French laws towards a system that changes the child into a right that is demanded and obtained, and the man into a gamete producer?
The French are very attached to the figure of paternity: the majority opposes ART which intentionally deprives children of a father. This law, which pretends to give new rights, would actually create three inequalities:
between children, according to whether or not they have a father;
between women, according to whether or not they are the “real” mother;
and between men and women who will inevitably demand surrogacy on the grounds of non-discriminatory provisions.
On Tuesday, June 11, the French Senate rejected the amendment, which had originally been voted on June 7th to extend the legal deadline from 12 to 14 weeks for performing abortions.
Tabled by Senator Laurence Rossignol, this amendment was initially adopted a few days earlier, without any preliminary discussion, by a surprise rising vote of 12 senators in favor vs. 10 against.
The chairman of the Social Affairs Committee, and the rapporteur, Republican Senator, Alain Milon, (both opposed to extending the legal time limit) requested a second deliberation. This is allowed under the procedural rulings, but requires the government’s agreement. French health minister Agnès Buzyn supported their request for a second deliberation, declaring: “I conscientiously and dutifully declare that the conditions for adopting the extension of the abortion period were non-satisfactory (…) since this deals with the organization of the health care system (…). This issue cannot be addressed within the scope of this text. The government thinks it is appropriate to hold a second deliberation.”
Alain Milon asserts that “no consultations were held with members of the scientific and medical communities” prior to drafting the bill. He continues: “It is not appropriate, in these conditions and circumstances, at the end of a text treating the organization of our health care system, to decide on the legal time limits for abortion.”
This time, in the presence of a full assembly, the Senate rejected this highly controversial issue, by 205 votes in favor, 102 against and 41 abstentions.
On Friday June 7, the French Senate adopted an amendment introduced by Senator Laurence Rossignol, to extend the time limit for legal abortions from 12 to 14 weeks of pregnancy, as part of the country’s new health bill.
Following a rising ‘surprise’ vote, in a practically vacant session, 12 voted in favor and 10 against. Thus the amendment was adopted in spite of opposition by the government and the rapporteur, Alain Milon.
Mrs Rossignol quoted one of the claims of the family planning protesting that there is no “scientific consensus about the definition of a legal time limit”.
French senator Rossignol also sponsored an amendment to revoke the specific conscience clause for abortion. This time, the bill was rejected by a vote of 247 to 92, since those present can cast absentee ballots on behalf of those who are not present.
When the joint committee meets to rule on the complete text of the bill, this article is expected to be rejected.
Alliance VITA points out:
This ideological “coup” is very far from considering the real life of women and couples who face unexpected pregnancies. To promote more and more abortions, without proposing any other options in a situation where lives are at stake, is absolutely irresponsible. Our position is to repeat our appeal for a scientific report on the situations that lead women to request abortion and on the consequences following this act in order to have a genuine abortion prevention policy.
A 2016 IFOP survey reported that 89% of French people believe that abortion leaves women with psychological scars, and that 72% think society should help women avoid abortion.
“Euthanasia, Behind the Scenes”, is a new book published by Mols, on the end-of-life and the consequences of euthanasia.
The foreword of the book was written Jacques RICOT, philosopher, and Dr Timothy DEVOS, hematologist and professor at Leuven University Hospital, coordinated the contributions from 8 well-known Belgian caregivers specialized in palliative care, including university teachers, doctors, nurses and ethicists.
Since 2002, when euthanasia was decriminalized in Belgium, requests have become rather commonplace. The authors chronicle their experience and reflections on euthanasia and end-of-life care in Belgium. Not only for caregivers, these notes are noteworthy for anyone who has questions about the sense of suffering, the meaning of life and death, and the consequences of the 2002 law which continues to raise many questions.
Two days before the European elections, Alliance VITA gives the results of its awareness campaign for “Fragile Generations”.
While all across Europe, countries are facing the social and humanitarian challenges of demographic decline and population ageing, the French are becoming more aware of the urgent need to foster intergenerational solidarity. The three steps of the campaign included:
1 / An IFOP opinion poll carried out for Alliance VITA which revealed that the majority of the Germans, and an even greater percentage of the French (78%), think that Europe has been focusing too much on economics and finances, and not enough on human and social aspects. In France, 52% consider that anxiety about the future keeps the birth rate down.
2 /In 120 cities throughout France, the public openly welcomed the 1000 volunteers distributing 100,000 informational leaflets, containing 10 observations, 10 different proposals, and suggesting a personal gesture in favor of intergenerational solidarity.
3 / An opinion survey was carried out in the streets by volunteers in 120 cities.
Of the 3000 people responding:
63% lament that “individualism or selfishness” is the main reason that individuals from fragile generations are being excluded.
41% state that Europe’s biggest weakness is due to “schisms and divisions in society”
45% prioritize implementing a “new intergenerational solidarity”
44% call for “changing our viewpoint” about the most fragile individuals and 31% for having “a lifestyle that brings generations together“.
The results of this poll were a confirmation for Alliance VITA that more solidarity between generations is wanted. Alliance VITA appeals to elected officials and citizens to make a commitment to increase intergenerational solidarity. To fight the increasing individualism, it is essential for the French and all Europeans, to have more confidence in the future.
In order to know the current rates being offered for oocyte donations, a Belgian journalist visited several fertility clinics throughout the country.
None of the clinics openly displayed their prices, since the Belgian law of July 6, 2007 concerning assisted reproductive techniques (ART) prohibits human gametes from being bought and sold. As stated in Article 51: “Gametes may be lawfully donated. Nevertheless travelling expenses or salary losses, as well as an allowance to cover any hospitalization costs for sampling the donor’s eggs may be reimbursed according to the King. “
Some clinics offer lump sums of approximately 500 € as compensation to donors. According to a specialist at a private clinic, even greater sums of money are offered since: “if no money was offered, there would not be any donors.” The highest rates are paid by the UZ Brussels clinic, where egg donations can be paid up to 2,000 €.
The journalist interviewed a 23-year-old student, who acknowledges: “A friend told me it was an easy way to make money (…). With 2000 €, I could buy a small car, help out my mother or pay for a holiday.” To meet the ever-growing demand for eggs, some hospitals turn a blind eye to donors’ motivations.
In the light of these lucrative offers, how can we be sure that young women are not donating eggs for the money?
In China, students donate their eggs to pay for their studies and can earn up to 50,000 € per procedure for oocyte sampling! The young women are chosen according to criteria based on aesthetics and their educational level. Although punishable by law in the event of an accident, this has visibly not deterred the procreation business traffic.
The UN Committee on the Rights of Persons with Disabilities (CRPD), is composed of independent experts in charge with implementing the UN Convention on the Rights of Persons with Disabilities (UNCRPD). On May 3, this UN Committee requested from France “interim measures”: the decision, rendered by the French Council of State on April 24, to stop nutrition and hydration for Vincent Lambert, should not be executed.
The Council of State rules unreasonable obstinacy
Indeed the French Council of State upheld Dr. Sanchez’s decision made a year ago on April 9, 2018, “to stop treatment” (nutrition and hydration) for Vincent Lambert, ruling it to be a medical case of unreasonable obstinacy.
Earlier this year on January 31, the Administrative Court of Châlons-en-Champagne had upheld this decision as being legitimate, based on three experts’ opinion. The report confirmed Vincent Lambert’s irreversible pauci-relational state, although continuing his food and water was not considered to be unreasonable obstinacy and furthermore, if deemed appropriate, he could be transferred to a specialized health care unit.
Following the French State Council’s recent ruling to stop Lambert’s food and water, his parents’ lawyers lodged two final and decisive appeals: to the ECHR and the CRPD.
New Appeal Refused by the ECHR
On April 30, the ECHR refused “the requests for interim measures that were submitted in order to suspend enforcing the French State Council’s ruling on April 24 2019, which would ban Vincent Lambert from leaving France” and stop his nutrition and hydration.
This ruling thus substantially confirmed thefirst decision made in June 2015 after multiple legal proceedings, which validated Dr Kariger’s decision (April 2013) to stop Vincent Lambert’s feeding and hydration.
Remember that Dr. Sanchez took over the Lambert case, when Dr. Kariger left the University Hospital in Reims. Sanchez then reinitiated the collegial procedure, rendering an identical decision as that made in April 2018. (Click here for a summary of the legal procedures dating from 2013 onwards).
Lambert’s state of health complies with UN committee’s definition of disability
The appeal for “provisional measures” lodged by Lambert’s parents’ was accepted by the Committee on the Rights of Persons with Disabilities (CRPD). Their objective is to keep Vincent Lambert alive, by maintaining his food and water. These emergency measures do not constitute any anticipated prejudgment of the Committee’s decision regarding the admissibility or the merits of the case which will be examined later.
This Committee is composed of 18 independent experts appointed by the member states. Like the ECHR, it can be called upon whenever national recourses have been depleted. It is charged with monitoring that the International Convention on the Rights of Persons with Disabilities (CIDPH) is properly enforced. France has adhered to this convention since 2010.
The French Human Rights Defender Jacques Toubon, responsible for ensuring France’s compliance with the CIDPH, states in the guidebook (dated December 2016, page 10): “After examining the communication and investigating the case within the State in question, the Committee issues the recommendations deemed necessary, for the State to implement the appropriate measures to correct the situation.”
France ratified this international convention for the protection of disabled people, and the additional protocol which establishes the CIDPH’s competence, allowing groups or individuals to seize this committee to intervene on their behalf. France now has six months to provide explanations. French Health Minister,Mrs. Buzyn, considers that France is not obliged to follow the recommendation of the Committee adding that France intends to respect this procedure and take into account, in good faith, the recommendations which could be made.
As a human rights expert explains: “According to international law, compliance with the UN committees’ opinions are not compulsory, although the UN committees endeavor for their decisions to be binding. Generally, the States show their willingness to comply. Otherwise, the committee’s authority would be undermined.”
As several revisions in the bioethics law are scheduled to be debated at the French Parliament in the coming months, Alliance VITA asked citizens to rank the 16 propositions.
A few days after the press conference was held, subsequent to the wide-scale public debates, an IFOP opinion poll was conducted to survey French opinions to revisions in the bioethics law.
The results show that only 1% of the French rated “revising the bioethics law to allow single women and female couples to have access to ART (Assisted Reproductive Techniques) without a father or male partner” as a number 1 priority. Merely 6% of the population rated this issue among their top 3 priorities! Consequently, this proposed reform finishes in last place, along with 2 others ranked as “least important“.
Tugdual Derville, Alliance VITA’s General Delegate, states:
“This opinion poll undeniably confirms that the French are concerned about other issues, versus that of changing current bioethical principles, especially that of allowing ART without a father, which would rescind the basic principles of procreation and parentage. If French President Macron listens to his fellow citizens subsequent to the National Consultations on Bioethics, and the Public Debates, he would be well-advised to stop trying to force through this reform. For his fellow citizens it is neither a prime concern, nor consensual, and would only contribute to dividing the French even further. It even appears shameful that Parliament waste precious time debating this reform, ahead of many other legitimate issues and priorities that need to be addressed! Recall that the ART without a father was not part of Macron’s election campaign promises, and that he also promised calm, peaceful dialogues focused on consensus. This has definitely not yet been established. Quite obviously, the French remain attached to the importance of the father’s role in society. “
On April 28, 2019, Alliance VITA launched an awareness campaign on a European level entitled “Vulnerable Generations”. This initiative gives the European electoral candidates the means to stay informed about the social and humanitarian challenges that all European countries are now facing. The recent data from the IFOP opinion poll has shown that German and French citizens are in favor of focusing more on “human and social” issues and less on “economic and financial” considerations.
Simultaneously challenged with population ageing throughout the continent, Europe must also deal with a demographic decline. The contributions from the younger generations, as well as the cornucopia of the older generations’ wealth of experience and resources are equally important. It is crucial to actively promote intergenerational solidarity and fellowship.
Intergenerational Solidarity: Commended by both French and German Citizens
Intergenerational solidarity and fellowship is the “take-home” message published on April 28, 2019 by the IFOP opinion poll on European demographic issues for France and Germany, carried out at the behest of Alliance VITA.
The vast majority of French and German citizens asserted that the upcoming European elections (May 26th) should concentrate on encouraging intergenerational fellowship and promoting different means to accompany and support those who are no longer autonomous. The director of the “IFOP” opinion department, Jérôme Fourquet, emphasizes: “Albeit that French and Germans’ have similar opinions on ageing, their respective views on natality are very different.” Their opinion poll reports that 52% of French people are either anxious or fearful about the future compared to only 36% in Germany.
But first and foremost, and in agreement with opinions expressing in the recent French national debate, the vast majority of French citizens (78%) think that European policies have been overly concentrated on economics and finances and not enough on humane and social issues. Despite having a very different economic and social context in their country, an overwhelming majority of Germans (71%) have voiced their agreement with the French.
10 Proposals for European Intergenerational Solidarity and Fellowship
Since Europe’s genuine fortune is embodied in its’ citizens, Alliance VITA has decided to shine the spotlight on these men and women. Thus prior to the European elections, voters can now reflect on ten different proposals formulated in favor of supporting and protecting citizens in France or in Europe who have become dependent and/or vulnerable. The information will be available on Internet, as well as by informational leaflets which will be distributed in 40 different cities by over 1,100 Alliance VITA volunteers.
For Alliance VITA this also represents an occasion to solicit the French on their opinion of intergenerational solidarity and fellowship. Gift cards will also be available which can be personalized to offer to an acquaintance from another generation as a gesture of solidarity.
Tugdual Derville, Alliance VITA’s General Delegate, author of “The Battle of Euthanasia” published by Salvator insists:
“By ruling that it is not illegal to deprive a patient of life-sustaining necessities, namely food and water, the French State Council has once again signed Vincent Lambert’s death sentence. In this day and age, it is unbelievably shocking that a court’s decision can be tantamount to condemning a sick individual to death. Rather than have Vincent put to death, members of his family who filed the appeal have repeatedly requested his transfer to a specialized healthcare unit. These units were set up to provide care for individuals in a chronic vegetative or pauci-relational state, in accordance with the 2002 French law relating to the guarantee of patients’ rights.”
The Court of Cassation chose to request an advisory opinion from the European Court of Human Rights on surrogacy, rather than follow the French law, which bans surrogacy. This represents an alarming signal for Alliance VITA.
Until now, the authorities at the Council of Europe have not shown unwavering determination to preserve the rights of women and children regarding surrogacy. If it does not point out the human rights violation, which is inherent in surrogacy, the ECHR’s stance remains grievously ambiguous.
Tugdual Derville, Alliance VITA’s General Delegate states:
“Although we commend ECHR’s refusal to yield to the most insulting claims from surrogacy promoters, we deeply regret that a court dedicated to human rights does not firmly contest the serious violation of these rights. Instead, this court merely mentions the “risks of abuse”. Is it necessary to repeat that surrogacy is inherently based on exploiting women’s bodies? This constitutes a flagrant regression for human rights. The act of surrogacy treats women as objects, and imposes a fragmented maternity and an artificial bond of filiation on the child. Even if the advisory opinion comes in support of France’s position when refusing the transcription of birth certificates established abroad, it also conveys the idea that this fraud against the law is relatively unimportant. The ECHR requires member states to establish parentage, whether by adoption or other means, based solely on the fait-accompli of surrogacy performed abroad. Therefore, this ambiguous position is interfering with French bioethics laws, ignores any consideration of the child’s best interest, and is contradictory to enforcing the ban on surrogacy.”
As part of a new divorce law that entered into force in Denmark on April 1, 2019, parents with children under the age of 18 who want to end their marriage must take a 30-minute online course.
Previously, Danes seeking divorce could do so by clicking online, requiring no judge nor waiting period. Now, couples must complete a mandatory internet course, before their marriage can be dissolved. This digital application is designed to help them adapt to their new situation and consider the consequences of divorce for their children. If couples fail to complete the course, they will remain officially married.
In 2018, Denmark registered 15,000 divorces, or 46.5% of marriages recorded last year. Approximately 70% of children under age 18 live together with both their parents.
This program with 17 modules offers concrete solutions to potential conflict areas, ranging from school issues to how to handle birthday parties. Entitled “Cooperation after Divorce”, it is based on a program developed by researchers from the University of Copenhagen and has been approved by the government. More than half the children in Denmark (54%) are born to unmarried couples. If these parents decide to separate, the course is not mandatory. Unmarried couples with children.
The modules were tested on 2,500 volunteers between 2015 and 2018, and gave impressive results, according to Martin Hald, a psychologist and associate professor at the University of Copenhagen who helped create the course. “In 12 of 14 cases we could see that the program had a moderate to strong positive effect on mental and physical health,” he said, “improving levels of stress, depression, anxiety, physical or mental suffering, and leading to fewer work absences.”
Just as these tighter measures are being enacted in Denmark, the recent Justice Reform Law dated March 23, 2019 has relaxed the time period for divorce in France from 2 years to 1 year.
According to a major report which has just been made public, Medical Assistance in Dying (MAiD), and continuous palliative sedation have risen sharply since the end of 2015 when these practices were legalized in Quebec.
A law passed on June 5, 2014 established a Commission for End-of-Life Care to verify that the legal guidelines for MAiD are properly respected. The Commission’s current report reveals that the number of euthanasia cases has rapidly soared in Quebec over a 28-month period (from the December 10, 2015 date when the law became effective, until March 2018), although there are significant regional differences.
MAiD: a definition very close to Belgian Euthanasia
In Quebec, for the request to be legally accepted, euthanasia, euphemistically called Medical Aid in Dying or MAiD, there are some prerequisites. The person must be at least 18 years old, able to consent to treatment, be at the end of her life following a serious and incurable illness, and enduring constant and unbearable physical pain or psychological suffering, which cannot be alleviated. These basic stipulations, as well as those relating to the practitioner’s role and the administrative verification process, are quite similar to those existing in Belgium since 2002.
However, the legal framework is different from the one Canada voted in June 2016. As in the United States, federal law not only allows euthanasia, but also assisted suicide. Moreover, it does not require the person to be clearly at the end of her life, but merely that natural death has become “reasonably foreseeable“.
The statistics recently published demonstrate that MAiD is rapidly spreading throughout Quebec, albeit with some disparities from one region to another, one medical institution to another, one doctor to another.
Over the 28-month period observed in the report, euthanasia was performed on 1632 individuals. The number per quarter doubled between early 2016 and early 2018, accounting for over 1.5% of all deaths in Quebec.
The average age for these individuals was 72, with the vast majority aged from 60 to 90. Cancer patients accounted for 78% of these cases and 90% had a life expectancy estimated less than 6 months, thus indicating that 10% were not really at the end of life as specified in the law. Those invoking both physical and psychological suffering numbered 89%. Psychological suffering was expressed in terms of existential suffering, the sense of being a burden, the loss of one’s dignity, one’s autonomy, or a loss in the quality of life…
The majority of MAiD practices were performed in hospitals, vs. 20% at home. In Belgium, euthanasia is performed at home 45% of the time vs. 40% when considering the entire country of Canada.
The Commission found that 96% of the doctors’ declarations complied with the legal requirements. The remaining 4% do not appear to be held accountable or prosecuted.
Inherent Ambiguity in Palliative Sedation
Over the same 28-month period, 1704 people received continuous palliative sedation, accounting for 1.3% of all deaths, albeit with immense regional variations. Between the years 2016 to 2017 this practice increased by 25%.
According to Quebec law, continuous palliative sedation is defined as: “Palliative care, consisting in administrating drugs or substances to a person at the end of life to relieve suffering by maintaining the person unconscious until death.”
When comparing this definition to that of MAiD, the wording doesn’t appear to be much different: “Care consisting of administrating drugs or substances by a doctor to a person at the end of life, at the person’s request, to relieve suffering by causing death “.
In both situations, the theoretical objective is similar (to relieve suffering) and in practice the final result is identical (the patient’s death). According to the report, 51% of patients in continuous palliative sedation die the same day they are sedated, and 81% die within 3 days. In addition, 78% have cancer, (as for MAiD) with over 50% declaring “refractory psychological or existential distress” in order to obtain continuous palliative sedation.
If we admit that MAiD and continuous palliative sedation are two different practices from a legal and medical standpoint, what about the real intention? Isn’t euthanasia the underlying objective for numerous cases of terminal sedations?
Extending Access to MAiD ?
On several occasions the commission’s report mentions the need to reflect on extending the law to align it with federal legislation and include cases which are currently exempted from MAiD, such as those with serious illnesses but who are not at the end of life, those with Alzheimer’s and similar diseases, and who would have difficulty expressing their consent. The Health Minister recently announced that the panel that is exploring the options for broadening MAiD practices will hand in its’ report late in May 2019.
However, an unprecedented study published in the British Journal of Medical Ethics, at the end of 2018, denounced the misuse and easy access to MAiD. The authors revealed that this was sometimes applied abruptly with little or no effort to mitigate or relieve the patient’s suffering through non-lethal medical means. Thus, some patients requested MAiD without being informed about palliative care for end of life, although this should be the preferred option.
On 4 April 2019, the European Parliament voted a directive to allow “parents and caregivers to better reconcile their work and family lives”. Fathers will be entitled to at least 10 working days’ paternity leave, and each parent will be entitled to at least 4 months of parental leave, including 2 months, which are non-transferrable.
This directive also establishes a new right for European employees: a minimum of 5 working days per year for caregivers, to provide care for either a relative or household member with a serious medical condition, a disability or an age-related disability.
The text also stipulates that member states must take the necessary measures to ensure that parents of children (up to 8 years old) and caregivers have the right to request flexible work arrangements in order to care for their family members.
Some countries, including France, provide better leave conditions compared to these new minimum requirements. On January 1, 2019, France set paternity and childcare leave at 11 calendar days. This leave is optional and can be taken following the 3-day birth leave or separately. Moreover, following the 2015 reform, intended to better distribute parental leave between both parents, the period was reduced from 3 to 2 years if only the mother took a leave of absence from work. The leave period is still 3 years if the father also takes one year off work. Based on the shortcomings observed in this reform, a recent report suggests reevaluating this leave policy which has penalized parents’ free choice.
France also provides caregivers with a leave of 3 months, which can be extended to a full year, but it is unpaid. In addition, a leave policy for family solidarity has been granted, to look after relatives who are seriously ill, at the end-of-life, with a maximum leave of 21 days, and includes a daily subsidy.
While this directive is intended to foster gender equality and assist parents with their family responsibilities, it also aims to address the demographic changes due to the aging European population. As specified in the directive’s preamble, informal care measures need to be implemented, to limit the impact on public finance costs.
Each EU member state now has 3 years to comply with this legislation on a national level.
Life expectancy has stagnated around 82.5 years in France in recent years, according to a study by the National Institute of Demographic Studies (INED).
In 2018, statistics found an average life expectancy of 79.5 years for men and 85.4 years for women, an increase of 40 years compared to the last century. According to the demographic study, since 2014, life expectancy has only increased on an annual average by only 1½ month for men and 1 month for women.
Many factors have contributed to the steady rise we observe since the beginning of the 20th century: the end of wars, the decrease in epidemics and famine, the increase in medical progress and the decrease in infant mortality. During the 70’s advances in the fight against cancer and cardiovascular disease also helped lower the age of death thanks to preventive methods, earlier diagnosis and improved medical treatment.
According to Gilles Pison, who wrote the report, “statistics for the past decade indicating this leveling-off may indicate that benefits due to the cardiovascular revolution have reached their limit.”
Any new rise in life expectancy would therefore be linked to an effective fight against cancer, which is currently the main cause of death. Mortality by cancer has significantly decreased in men and continues to fall. However, due a rise in smoking between the years 1950 to 1980, the rate of cancer in women has increased. By comparison, the Japanese hold the world record of longevity at over 87 years.
Since a current hurdle for increasing life expectancy is neurodegenerative disease (Parkinson’s, Alzheimer’s), advances in treatment could certainly contribute to improving the statistics.
Grow old and stay healthy? A recent survey of senior citizens shows “ageing well” is important for them: stay healthy with a positive outlook including an active and fulfilling social life.
Consultations on child welfare and support programs were launched on March 27 in France by Adrien Taquet, the Secretary of State for Childhood Protection, in coordination with various social service departments, associations, and professionals. Individuals who were placed in protective custody as children will also participate.
Regional disparities account for the fact that currently all children do not have identical access to social assistance and protective measures. Six working groups will study the issue of breakdowns and disruptions in custody programs, how to improve schooling, how to best care for children with disabilities who are placed in custody, and will also evaluate the quality of child welfare services.
This deliberation comes after the French National Assembly appointed a task team on March 6, to investigate welfare and child support responsible for monitoring children placed in foster homes or institutions. The task team was appointed in response to a controversial television broadcast (Channel “France 3”), which denounced several flaws in child protection programs. Another important challenge is to develop a program for these young people to help them after their 18th birthday.
Since the child protective program is not centralized, the National Council for Childhood Protection cannot currently ensure equal entitlement rights for all children on a nationwide level. In an interview with Le Figaro, Adrien Taquet explains that “we should be examining how practices are implemented. For example, in health care, many of those on child welfare and support programs do not even have regular medical check-ups or health records and children’s’ psychiatry services are overwhelmed. We intend to launch a test program to evaluate how these children are cared for, starting at early childhood, by creating an annual subvention financed by social security. ”
In May, the Secretary of State will also announce protective measures against psychic or physical sexual violence. An overwhelming majority (80%) of these acts committed on children occur within the family environment. In addition, verifications would be implemented to control the “grey zone” of leisure time when children are entrusted to the supervision of totally unknown adults. Another issue to be resolved is the accessibility of data on known sex offenders. Discussions are also being held regarding the appointment of a referring hospital physician for cases of abuse. In cases where an infant’s death appears suspicious, a forensic pathologist could be immediately called upon.
Without any preliminary discussions or suggestions for preventing abortion, a Health Bill was adopted at the first reading in the French National Assembly, facilitating even broader access to abortion.
The amendment stipulates that within 6 months of the law’s enactment, the government must submit a report to the Parliament about the “genuine accessibility to abortion, the difficulties encountered in the various regions of France, including those due to some practitioners who refuse to perform abortions.”
This is clearly another attempt to abolish the conscience clause for health professionals. Against the government’s instruction, the Social Affairs Committee had already tabled amendments to remove this specific conscience clause for performing abortions. Although the previous amendments were rejected, this request for a report is a backhanded way of attacking the conscience clause again and of putting undue pressure on medical professionals. Indeed, as Alliance VITA reminded, France has a high rate of abortion with more than 210,000 abortions performed every year. We maintain that policy makers should be alarmed by the lack of a genuine abortion prevention policy, rather than concentrate on stigmatizing health professionals who act according to their conscience.
Alliance VITA requests that a study be carried out on the situations that lead women to seek an abortion, and on the consequences of this act, to elaborate an adequate abortion prevention policy. An IFOP opinion poll published in 2016 stated that 89% of French citizens think an abortion leaves women with painful psychological marks, and 72% believe that women should be more helped by society to avoid abortion.
After consulting various social services for the past 5 months, the report “Advanced Age and Autonomy” was submitted to the French Health Minister, Agnès Buzyn, by the President of the High Council in charge of allocating funding for this sector, Dominique Libault, on March 28.
Today in France there are 1.5 million people aged over 85. By 2050, this age group will triple to 4.8 million. Consequently the percentage of dependent persons could increase by 50%. In the report’s preface Mr. Libault laments: “Time is of the essence. The entire report focuses on switching from caring for someone who is dependent, to implementing support systems to help the person remain autonomous. (…) Our society must include the elderly, and not isolate them, in their own homes or in institutions. We need to have a new outlook on how to treat advanced age”.
Since by 2030 there will be an additional 40,000 French seniors who will be dependent, the newly published report gives 175 measures. Ten of these are classified as priorities, aimed at meeting the 3 following objectives:
promote home care (the solution preferred by most French people),
improve residential care in nursing homes (French “EPHADs”) for the elderly, dependent individuals.
address the personnel shortage for elderly care.
To enable dependent persons to remain at home, “their caregivers who are still in the work force, could be compensated for a leave of absence” for approximately 50 €/day, similar to that already allotted for parental presence and care of infants who are sick or handicapped.
Over the past 2 years, under-staffing in French nursing homes has been widely commented. Based on the 2015 statistics, the report recommends increasing the ratio of staff per elderly resident by 25% by 2024.
A national awareness campaign will be launched to attract candidates and address the shortage of caregivers in both individual homes and nursing facilities.
The caregivers who were consulted for the national report are disappointed; they believe that local efforts for solidarity should be more developed and receive more support.
The changes that can be done without legislative impact could be rapidly implemented, before summer. The French Health Minister, Mrs. Buzyn, announced that she intends to table a bill in the fall.
Advanced aging is an essential issue, not only for France, but throughout Europe. Alliance VITA underlines it as a major challenge for the candidates in the upcoming European elections, in order to build a coalition where the rights of the most vulnerable could be taken into account.
Published on March 13, 2019 in the journal Nature, renowned scientists have called for a “global moratorium” on human germline editing for clinical purposes, that of changing heritable DNA in sperm, eggs or embryos to make genetically-modified babies. Among the scientists is Frenchwoman, Emmanuelle Charpentier, a co-discoverer of CRISPR-Cas9 technique.
After its catchy headline, the authors immediately state that their proposed moratorium does not apply to germline editing for research, provided the experiments do not involve implanting an embryo in a uterus, with the intention of giving birth to genetically-modified babies.
Although the signatories agree that modifying human DNA is neither safe nor effective, with a high risk of inducing unintended mutations, they are not at all calling for an international ban. They propose for each country to freely decide, and simply suggest not using this technique on embryos and gametes to give birth to GM babies “unless certain requirements are met”.
To define international guidelines, the authors recommend an initial moratorium of a fixed duration (they suggest a 5-year period) in order to evaluate the technical, scientific, medical, societal and moral implications. Thereafter, each nation could choose to maintain the status quo, to prohibit, or, on the contrary, to consider allowing these new practices for human procreation.
Prior to legalizing any new applications, the scientists suggest that multidisciplinary and public discussions be held in the country concerned, to carefully evaluate whether the application is appropriate and justified, and to inform its citizens if a broad societal consensus is determined for proceeding with human germline editing.
Blanche STREB, Alliance VITA’s Director of Training and Research, author of “Dystopia: the World of Designer Babies” declares:
“Moratorium is indeed the appropriate word… Moratorium originates from the Latin word, moratorius, which means “to postpone or delay”. What these leading scientists are clearly proposing is equivalent to gaining momentum on the runway for the long jump: “prepare to jump farther by taking a few steps backward”! This kind of half-hearted statement is not reassuring. And yet, the recent bombshell announcement of the first gene-edited babies in China, should strengthen political and scientific stances. Humanity must be protected against these temptations of tinkering with the human being at the beginning of life, jumping over precautionary principles for these babies who have become human guinea pigs “.
The authors suggest establishing an international “coordinating body”, in particular to provide the necessary information to any nation considering authorizing a particular gene-editing application. In their opinion, this global consortium could be organized under the World Health Organization (WHO) and could issue reports on a regular basis. They also recommend creating two separate subpanels: one composed of biomedical specialists for technical, scientific and medical considerations, and the other composed of specialists focusing on societal, ethical and moral issues.
Recently, the WHO has announced the creation of an “Expert Advisory Committee to Develop Global Standards for Governance and Oversight of Human Genome editing”. This Committee will first meet in Geneva on March 18-19, to agree on a working plan for the upcoming 12-18 months.
Alliance VITA denounces an attempt to abolish the conscience clause for doctors and health professionals using amendments to article 17 in France’s Health Bill proposal, which is being discussed by the Social Affairs Committee.
Although the bill aims at reforming the Health System, some MP’s from Macron’s party LREM (La République en Marche) and from the left-wing, eco-socialist party “La France Insoumise” are attacking, against the government’s instruction, the freedom of conscience clause, stipulated by law for health professionals regarding abortion.
Article L2212-8 of the Public Health Code specifies that “a doctor is never required to perform an abortion but must immediately make his refusal known, and refer the person concerned to other practitioners likely to perform the abortion (…). No midwife, nurse, or medical assistant can be required to assist in performing an abortion.”
Tugdual Derville’s point of view, as Alliance VITA’s General Delegate:
“If the 1975 law on abortion includes an explicit conscience clause for health professionals, this is due to the very particular nature of an act that ends a human life. A professional cannot be forced to act in absolute contradiction to his conscience. The implication of this ideological maneuvering of some MP’s, is that today health professionals are nothing but service provider. However, the conscience clause legitimately recognized for abortion, out of respect for the caregivers’ personal convictions, is essential for protecting their freedom of conscience. If someone is forced to act in complete contradiction to his conscience, this fundamental democratic freedom is disregarded and trampled on. Many caregivers are likely to be very uncomfortable should this conscience clause be abolished, at a time when the health care system is supposedly being restructured. In addition, it could lead to discrimination, since some caregivers may be forced to abandon their profession.”
With more than 210,000 abortions performed annually, France has a high rate of abortion. Alliance VITA maintains that policy makers should be alarmed by the lack of a genuine abortion prevention policy, rather than concentrate on stigmatizing health professionals who act according to their conscience. While France is going through a serious social crisis, Alliance VITA solemnly asks the government to face its responsibilities and firmly reject this libertarian disposition.
While the French government is deliberating on child welfare services, the National Assembly has appointed a task team to investigate on welfare and child support in charge of the follow up of children placed away from home.
This decision follows a controversial broadcast on French television (Channel “France 3”), which denounced several flaws in child protection programs. This included being bounced from one foster home to another, violence in the foster homes, lack of training for the educators, etc…Placed in protective custody as a child, the MP Perrine Goulet (“La République en Marche” party) enlisted several other deputies in January to create a committee to examine child welfare and support programs.
In France, action is taken to protect 341,000, and over half is placed in foster institution or families (statistics for 2017).
This investigative task force includes 23 deputies, who will evaluate the competences and appropriate role distribution of the responsibilities on both national and regional levels. Training for personnel, and ways to implement educational programs will also be studied. Until the end of the legislative period, this task team will carry out their functions, which will involve travel throughout France and abroad.
Simultaneously, at the end of January, the government launched a plan for social assistance for children, with provisions which should be confirmed this summer. The Secretary of State for Childhood Protection, Adrien Taquet, mentions that important subjects to be treated include the methods of recruiting and training professionals, and providing access to social assistance. In his opinion, this would help “implementjudicial measures for placing children more rapidly“.
Another important challenge is to develop a program for these young people to help them after their 18th birthday. Indeed some of them end up homeless. According to a 2016 survey published by “INSEE” (National Institute for Statistics and Economics), 23% of the homeless adults in France had previously been placed in homes or institutions as children.
On February 26, 2019, the High Court in Versailles condemned the web host provider of a Spanish website, for advertising surrogacy services in France.
This decision was rendered after the Spanish website Subrogalia refused to delete their surrogacy ads which targeted French people. Already in 2016, the Lawyer’s Association for Children issued Subrogalia a formal notice to delete its surrogacy ads, regarded as illegal in France where the practice is prohibited. Since Subrogalia did not respond, the lawyers’ association contacted the host provider, who also refused to delete the internet site’s content.
The High Court in Versailles validated the association’s request to declare the site’s content as illegal, and also by verifying that the web host provider was aware of this illegal publicity.
Following this decision, the web host provider must stop hosting the Subrogalia internet site.
Alliance VITA firmly denounces the media coverage via “Konbini” (a French pop culture website), regarding a woman who declares having killed her severely disabled 3-year-old child more than 30 years ago.
Caroline Roux, Alliance Vita’s Assistant General Delegate asserts: “It is unacceptable to publicly endorse infanticide. All children have the right to be protected, especially when they are weak, frail or disabled. This media coverage is utterly insulting to people with disabilities and to their loved ones.“
In order to support people facing life issues of severe dependency and the End-of-Life, Alliance VITA has developed a specialized listening service. VITA members are particularly attentive to the difficulties arising from dependency and care-givers exhaustion. Caroline Roux empathizes: “It isunderstandable that these parents were overwhelmed by their son’s handicap. In this type of circumstance, it is absolutely necessary to seek help”. And continues “This woman’s justification for killing her son is endangering other children and their parents, even to the point of causing a pandemonium, as happened previously following reports published on this site. “
A few months ago, the same website broadcast a video of Jacqueline Jencquel who declared that she didn’t want to live beyond a certain age, where she might risk losing her self-sufficiency. Thus this French woman has set a date to end her life in a Swiss clinic in 2020 by assisted suicide. People with disabilities felt deeply hurt and strongly denounced her assertion which was an affront to their dignity. In the weeks following the broadcast, Alliance VITA’s SOS End-of-Life Service received a landslide of requests for information on assisted suicide from mentally-weak individuals.
On February 27, a European Charter on Advanced Age was published to promote consideration for older persons. This charter intends to challenge the candidates in the upcoming European elections, (May 23-26) to give older people an appropriate and dignified place in today’s society.
The charter was drafted by influential persons and doctors from various associations and academics who involved in inclusion and autonomy issues. Their leitmotiv is to “fight against ageism as a means of discrimination and stigmatization.”
Among the people who signed the charter are Grégoire Bellut (from Alternative Collective Lodging), Edouard de Hennezel (founder of the Vulnerability and Society Circle), Alain Villez (President of the Little Brothers of the Poor), etc. They personally endorse the charter, independently of their organizations. As director of the Association of Directors to Serve the Elderly, known in France as “AD-PA”, Romain Gizolme, insists on the fact that the general public is unaware of age discrimination. It is “poorly known, poorly identified and underestimated. Nevertheless ageism is very prevalent in the work world “. They suggest including « a complete overhaul for inter-generational policies” in the candidates platform for the upcoming European Parliamentary elections.
On February 25, at least 4000 members of the French Society of Geriatrics and Gerontology (SFGG) signed an editorial entitled “We are all older than someone”. They hope that “one daysocial norms will be rectified, as they were for sexism and racism.”
Also campaigning for equal rights in European policies is the AGE Platform Europe, who published 7 key recommendations to protect the rights of Europeans at any age. In 2010, a European Manifesto on the Rights and Responsibilities of Older Persons in Need of Long-Term Care was developed as part of the European Commission’s Daphne III program.
A major issue in the coming decades will be dependency or loss of autonomy, especially for the elderly. In a society driven by utility and profitability, some describe these changes as a form of “social euthanasia” for older persons.
Social cohesion will be unattainable without attributing a place for old age at the heart of society. A report published in 2016 underlines that “ageing on the high end of the scale” or longer life expectancy goes with “ageing from the lower end” or lowering of the fecundity of almost the whole planet. Thus to avoid risking a breach in the dynamics of intergenerational solidarity, future policies need to take these two phenomena into account.
New revelations have been reported in the case of the Chinese scientist who first used the CRISPR-Cas9 technique to genetically modify twin babies’ genes before birth.
The birth announcement of twin girls in China last November sparked international condemnation for violating scientific guidelines against the use of gene-edited embryos to start pregnancies. He Jiankui admitted to crossing the red line to test his hypothesis of “renderingthese babies HIV-resistant” by using the editing tool CRISPR to delete the CCR5 gene. This gene codes for a receptor in the immune system (lymphocytes), whereas the HIV virus requires this gene to enter human blood cells to infect them to cause AIDS.
However, the CCR5 gene is responsible for additional biological functions. When its’ DNA is modified, the impact and any possible collateral damage are only gradually observed by monitoring the babies’ development. As a result of the scientific manipulation in this life-size experiment, these Chinese twins are genuine human “guinea pigs”.
Since the CCR5 gene is also involved in cognition, it is believed to improve memory recovery after a stroke. According to a publication in the journal Cell on February 21, 2019, people with a genetic mutation called Δ32 CCR5, which prevents this gene expression, could have better academic results. The renowned scientific magazine from the Massachusetts Institute of Technology (MIT) just outside of Boston, in Cambridge, Massachusetts interviewed Thomas Carmichael, who led the new study. He believes the link to educational success is interesting but says it needs further study.
There is no evidence that He Jiankui actually set out to modify the twins’ intelligence, but several scientists are now mentioning this possibility. The Chinese scientist was certainly aware of the link between CCR5 and cognition, which was first shown in studies on mice in 2016.
Currently being investigated by the Chinese police, He Jiankui’s research has been suspended. According to the preliminary results, it appears that the scientist acted alone by forging official documents, which would be catamount to admitting many flaws in the Chinese institutional system.
Although China has announced that it will define new rules for supervising genetic research, many Chinese and foreign researchers suspect that the project may have been government-funded.
On February 13, the Spanish Consulate in Kiev refused to register babies born to surrogate mothers in Ukraine. Spain intends to dissuade its citizens from having recourse to this practice, which is a serious violation of human rights.
A source from the Ministry of Justice explains that “These parents have resorted to a practice that is illegal in Spain, and which is used to exploit women’s bodies in exchange for money”.
Every month a dozen babies had been registered in Ukraine on behalf of Spanish sponsors. The embassy said that while existing cases will be handled individually, no new cases will be accepted.
Already last summer, dozens of Spanish citizens were blocked for several weeks from returning home with their surrogate babies born in Ukraine. The Spanish government mentions concerns about medical malpractice and human trafficking.
In Spain, surrogacy is strongly opposed by the ruling Socialist party, as well as the right-wing People’s Party and Podemos. Only the Ciudadanos (liberal moderates) are in favor of surrogacy.
Ukrainian law permits surrogacy for heterosexual couples who are either Ukrainian nationals or foreigners. Prices are known to be cheaper than elsewhere, even though they reach 50,000 €, which includes a compensation – which is not fixed by contract – for the surrogate mother. The law in Ukraine states that the baby belongs to the “intended parents” or sponsors, and the surrogate mother has no parental rights from the moment of conception.
Surrogacy is illegal in Spain, but agencies continue to encourage this practice abroad, without any sanctions for the moment.
On February 26, 2019 the French High Council for the Family, Childhood and the Elderly issued a report recommending reform in parental leave policies to improve balance between work and family life.
Based on the shortcomings observed in the parental leave reform implemented in 2015, the recent report examines the issue of parents caring for their own children, and their eligibility to receive parental benefits if they interrupt or reduce their professional activity.
This report complements the report dealing with “care arrangements for children under age 3, arrangements which mainly concerned the development of complementary means of formal childcare”.
Indeed, the report emphasizes that the use of the financial help known as “PreParE” (compiled benefits for a child’s care and education), rapidly decreases (a 32% drop between 2016 and 2017, and more than half (52%) since 2009). This indicates how inadequate this subsidy is for families, partly because the amount granted is low, and because of the eligibility criteria, and the reduced duration for entitlement. One of the reasons accounting for the parental leave’s lack of appeal is that the benefit has been devalued by 38% compared to salaries.” Henceforth the rapporteurs propose calculating a benefit index based on salaries, on a permanent basis.
Parental leave had previously been reduced to 2 years if only the mother took time off work. However, despite losing a year of benefits for interrupting their professional activity, “mothers remained inactive until their youngest child turned 3, or even until he began kindergarten.” The loss of income has doubled the number of poor families. The percentage of poor households has increased from 16% to 33% in families where mothers took maternity leave.
French childcare policies were previously focused on giving parents a free choice. Reducing parental leave benefits to only 2 years has had a huge impact. The report states that “one of the most important criteria cited was to have reliable child-care until school enrollment”.
Therefore the recommendations aim to mitigate the conditions and fulfill family’s requisitions. Some specific propositions include to continue parental leave benefits until the child enters kindergarten, to encourage part-time work and to simultaneously extend parental leave for a longer time period, or to allot more substantial benefits for short-term parental leaves.
The proposals focus on 4 points:
early child care;
Helping parents of young children keep or find work;
Reforming parental leave conditions and subsidies;
Better equality for sharing time between both parents, and to fight gender inequalities.
The authors warn that “although reform appears highly necessary, the immediate costs would rise, therefore negotiation would be required to establish a timeline. The reform should not only be considered in terms of its immediate impact on the public finance budget, but also the anticipated long-term benefits for society, beginning with the children.”
To put the latter observation into perspective: the current “PreParE” policy has been demonstrated as being inadequate for assisting families; and from 2013-2018 families allotted benefits were decreased by 1 billion €.
A recent European agreement dated January 24, 2019, has also addressed this issue of balancing work and family life, thus paving the way for a new policy, as the current report cites in Appendix 1.
The American scientific magazine MIT Review, from the renowned University of Cambridge, Massachusetts Institute of Technology has just published a report estimating that more than 26 million people have already used these kits to have their DNA tested.
If this growth trend continues, the companies selling these kits will have the “genetic fingerprints” of more than 100 million people.
Sold on the Internet, these DNA test kits are very simple to use. Supplied with instructions to swab for a little saliva which is mailed back to the laboratory, the customer receives his DNA results by e-mail within a few weeks time.
These tests compare an individual’s genetic fingerprints or DNA profile to a database of populations in several parts of the world and can also compare the percentage of DNA in common with those previously tested and whose genetic data is available. By noting the genetic ancestry for each client, these companies have gradually compiled huge databases.
Almost the entire market is held by 2 companies: Ancestry DNA and 23andMe. Ancestry DNA offers to study the ethnic origins of its clients or to help them find a person with whom they have family ties. A subsidiary of Google, 23andMe originally proposed these tests to provide information on health and genetic risks. It now also allows people to find a family member, such as Arthur Kermalvezen, born by ART (assisted reproductive technology) with anonymous donor, who found his biological father through these databases. Also an offspring from a donor, his wife found a half-sister and a half-brother via these databases.
Major issues are raised since these tests are available to the public on the Internet. Data protection could be problematic, in addition to the fact that the results are not always reliable. Test results communicated without any medical support could be a difficult shock, for example, when receiving an e-mail notice for a predisposition to Parkinson’s or Alzheimer’s disease…
In France, DNA testing or genetic fingerprinting is only allowed for medical research or police investigation purposes. Otherwise, if a person requests DNA testing for himself or a third party, or requests identification of an individual based on his genetic fingerprints, he could be fined €3,750 [1].
On January 23, 2019, the French National Institute of Demographic Studies (INED) published the research results by 2 scientists on late motherhood, which is occurring more and more frequently in the developed countries.
In the 20th century, economic and social developments have markedly changed women’s fertility patterns in the developed countries. These researchers account for this by the phenomenon of women delaying their first pregnancy until age 40 and over. They note that in 1984, first births at age 40 accounted for less than 0.5% of first births. In 2014 they represented between 2% and 4.7% depending on the country: a spectacular increase in delayed pregnancy, partially due to ART.
The causes of this delay are cumulative: people are staying longer in education, delayed entry into the labour market, family planning, various sentimental choices, and pregnancies resulting from a second union. Abortions and widespread use of contraceptives are also cited as important causes.
Today, even the pregnancy rate among women over 50 years is on the increase: in the European Union there were 287 cases in 2002, compared to 1,293 in 2016. However, several studies warn against the complications of delaying pregnancy to a later age: pre-eclampsia, hypertension, gestational diabetes, as well as a higher percentage of caesarean deliveries and premature births…
Included in the new bioethical bill agenda in France, is the possibility to conserve one’s oocytes, thus insinuating that pregnancy can be delayed beyond a possible and “reasonable” age.
Already in 2005, the French High Council on Population and the Family noted their concern for “health risks for the child and the mother” related to delayed pregnancy by denouncing it as a “social problem” and a “genuine public health problem “. Faced with this somber scenario, the High Council has called on public authorities to perform their «dutiful obligationto inform citizens so they can make informed choices“, and to ensure “stricter ART supervision”.
As Alliance VITA advocated in its hearings during the French Bioethics Law revision, awareness campaigns for young girls and boys are urgently needed, to stress the importance of biological clocks and bearing children during natural fertility periods, relatively young. Infertility prevention needs realistic information on fertility and a genuine political commitment to promoting social conditions that allow young women to juggle with higher education, entry into the professional life and maternity.
On February 5, 2019 to mark the national day dedicated to preventing suicide, the French public health agency published several well-documented articles on suicide and attempted suicides in France over the past several years.
High suicide rate in France
According to the Center of Epidemiology statistics investigating medical causes of death, in 2015 there were 8.948 deaths by suicide in the 13 metropolitan regions in France.
Although generally thought to be underestimated by approximately 10%, it is nevertheless lower than in 20001.
The national average of deaths by suicide is 15.8 per 100,000 inhabitants. This figure covers large disparities, particularly by region. In the North-West, 4 regions are largely above it, although the causes are difficult to determine: Brittany (24.7), the Pays-de-la-Loire (21.3), Hauts-de-France (20.7) and Normandy (19.5). However, the Ile-de-France region ranks 7.6 with the lowest rate and half the national average.
By examining the death certificates between 2000 and 2014, suicides were found to account for 1.9% of all deaths, with a majority being men (74%). Mental disorders represented 40% of suicides, with depression accounting for the vast majority: 38% for women and 28% for men. Compared to other individuals, suicide was cited 41 times more for these individuals, compared to other causes of death.Previously other studies have also shown significant disparities according to age, occupation, family environment, etc.
Analyzing suicide attempts
In 2017, the French Public Health Barometer interviewed 25,319 people aged 18 to 75 regarding any suicidal thoughts over the past 12 months, as well as any attempted suicides over the course of their lives including the preceding 12 months.
The main results are:
2% of those surveyed had attempted suicide at some point in their lifetime.
7% reported having suicidal thoughts in the previous 12 months. The factor most frequently cited for considering suicide was having experienced a depressive episode during that period.
The factors most associated with suicidal behavior were: being female, having financial difficulties, being single, divorced or widowed, experiencing professional inactivity or traumatic events (domestic problems, sexual violence …)
The majority of adults reporting suicide attempts were 15 – 19 years old at the time; for women 30% occurred at that age and for men 19.5%.
There are more suicide attempts among women (9.9% say they have made attempts) compared to (4.4%). Yet more men die from suicide, since they employ more lethal means (firearms, hanging).
Urgent necessity for improving suicide prevention
In the weekly Epidemiological Bulletin, Pierre Thomas, Psychiatry Professor in Lille, emphasizes the national tragedy of suicide deaths in his editorial: “Every suicide is a disaster, causing so much pain and injury to loved ones, and it can be one of the most distressing events that health professionals confront. On average, suicide is considered to leave 7 loved ones grieving and affects over 20 people. Yet it has been shown that the risk of suicide is significantly increased in the people surrounding a suicidal person (family, classmates, co-workers, etc.) “.
In conclusion, the authors of the 2017 barometer emphasize that pursuing prevention policies should be a priority: “Our results confirm the interest of launching a suicide prevention policy focused on high-risk individuals and their families, to provide help before suicidal crisis situations occur, to identify and manage situations involving psychological suffering early on. They also advocate multidisciplinary care (health, social, medico-social), especially for vulnerable people. “
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1 According to the National Suicide Observatory’s third report published in February 2018, there were 8,885 deaths by suicide in 2014, officially recorded in metropolitan France, i.e. an average of 1per hour; down by a fourth (- 26%) compared to 2003.
For the fourth and closing evening of the Bioethics Conference organized by Alliance VITA this year, the theme addressed was “Life, Under Pressure?”
The conference was opened by the philosopher and mathematician, Oliver Rey, author of “Transhumanism: Illusion and Deception” (published by Desclée de Brouwer, 2018) who spoke of the difficulties men have to adapt to the environment that mankind itself created, but which is overwhelming. Thus the scientific movement towards an enhanced, improved man: “Transhumanism is flattering for the childish fantasies of being all powerful, but it paves the way for being totally dependent. That’s why it is being supported by powerful firms which will receive giant profits from this total dependency.”
Tugdual Derville, Alliance VITA’s General Delegate, and author of “Time for Mankind” (published by Plon, 2016) described humanity as being torn apart into “four practical ideologies”: tactics based on technology, tactics against the human species, Malthusianism and eugenics. All of these ideologies make it difficult to clarify human beings’ identity, dignity, sovereignty and accountability. Caught somewhere in between animals and robots, humanity is also attacked by those who contest the population numbers or who want to impose standards of quality. To resist and counter these ideologies, Tugdual suggests 3 antidotes: search for a peaceful equilibrium with nature, a closer contact with those who are weak or vulnerable, and to be open to transcendence.
This evening’s guest witness was General Henri Marescaux, who founded the « Tamaris » association which helps both French citizens and foreigners find alternatives to prostitution. His book “The prostitutes will precede us” was published in 2018 by Mediaspaul. He described the daily ordeal to help women leave this vicious circle. He also emphasized the fact that unfortunately the laws passed in the past several years do not address the real problems, whether they involve punishing the clients, or granting French citizenship.
Blanche Streb, Alliance Vita’s Research and Training Director, and author of “Dystopia: The World of Designer Babies”, published by Artège in 2018) presented the bioethics decoder on the theme of “Ethical or Pathetical”. She treated the impact of the inappropriate use of pathos in our society. It is regularly used to justify scientific transgressions. “Life under pressure… our conscience hears this underlying murmur which shows that life depends on us, and counts on us. The cultural lines have been drawn between technology, considered as an absolute truth, and humanity’s moral responsibility.”
Caroline Roux, VITA’s Assistant General Deputy and Director of VITA International, spoke on international aid. “Ethically speaking, the main problem is placing an interpretation of Human Rights on a slippery slope towards allowing individual rights to take precedent, to the detriment of the most vulnerable and of protecting human life.” She emphasized that Alliance VITA has just been accredited by the UN’s Economic and Social Council. This will open new perspectives to cooperate and to speak up at the United Nations in favor of those who are vulnerable.
François-Xavier Pérès, as Alliance VITA’s President, gave the closing speech for this cycle of the Annual Bioethics Conference, by a call to action for those who think that life and vulnerable individuals deserve protection. Faced with unpredictable politics, and the bioethics law currently being revised, he called for participation in the upcoming national debate. “Commitment is answering to a call that is costly. A desire to commit rises from and beats in the heart. If the answer is “yes”, then we’re off for the adventure, with all the risks entailed!”
This was the closing session for this year’s innovative Bioethics Conference organized by VITA, which was exceptionally well-attended both in France and abroad.
The European Institute of Bioethics has evaluated the new medical code regarding Euthanasia, recently published by the regional euthanasia commissions in the Netherlands.
This text explains how legal criteria relating to euthanasia must be interpreted, and reveals the ambiguities and contradictions of how this practice continues to drift off-course.
According to the latest report, in 2017 a total of 6,585 acts of euthanasia were carried out. This represents 4.4% of the total number of deaths and an increase of 8% compared to 2016. Following palliative sedation, a total of 32,000 people also died in the Netherlands in 2017. Psychiatrists had launched a petition to warn about the euthanasia practiced on people with psychiatric disorders.
On January 14, Alliance Vita kicked off its 2019 bioethics conference. As in the previous years, the conference will be held on four successive Monday evenings. The theme for the first evening was “What is the Value of Human Life?”
In 152 cities throughout France and abroad, 8000 individuals took part simultaneously in this bioethics video-conference. This year, registrations have reached a peak for this innovative event in France.
Alliance VITA’s President, François-Xavier Pérès set the tone at the opening evening by declaring: “Alliance VITA’s objective is not to grieve over the situation, and say ‘NO’ to all changes, but rather to say ‘YES’ to the extraordinary value of life, and create awareness by warning, supporting and comforting.”
Adeline le Gouvello, lawyer and member of “Jurists for Children” and of the Institute for the Family and the Nation reiterated one of the fundamental principles of French law: the human body cannot be sold. She emphasizes that this principle is currently threatened: “Allowing human bodies to be marketed: allowing the vulnerable to be made available for the strong, allowing the poor to be made available for the rich”.
Alliance VITA’s Director of Training, Blanche Streb, suggested that we consider how assisted reproductive techniques (ART) are becoming more and more artificial, with the temptation to manufacture human lives regardless of the cost. She emphasized that human life does not have a price tag, due to its innate dignity, and that a person’s dignity includes the aspects of conception and pregnancy. Author of “Dystopia: the World of Designer Babies”, Blanche Streb concluded with this powerful invitation “More than offering life to a child, we offer him HIS own life, which demands our courageous involvement, not as “owners ” of life, but as people serving “life”.
Our moderator, Priscille de Lassus then interviewed guest speakers Bertrand and Gaëlle Lionel-Marie, (National Bioethics Officers for the French Catholic Family Association), who have been married for 23 years and who cope with the issue of infertility.
Then the Bioethics Decoder, focused on « The human price of surrogacy », with Caroline Roux. She described the consequences of this practice, which has made headlines in these past few years. Poor women in Asia, Eastern Europe but also in the USA are being exploited by commercial agencies that have a booming business. She explained that even if a woman offers to become a surrogate “gratuitously”, such as for a loved one, a sister, a friend, a mother…it is still a source of emotional pressure and confused parental relationships.
Valérie Boulanger, in charge of our information and listening service SOS Bébé, initiated the first session of « humanitarian VITA ». She shared her experience with those who have to cope with infertility, and underlined the importance of actively listening to individuals facing these intimate and painful issues, to help them avoid being misled, to provide support and give them courage to face disapproval.
Finally, Tugdual Derville, VITA’s General Delegate, spoke about “Consenting to Limits” for the section on “The price of brotherhood”. He asked each participant to imagine his own funeral and to choose 3 words that he would like to be remembered by, and to adopt these words as “guidelines for the rest of his earthly life”.
This enriching evening was concluded by a round table discussion whereby the speakers responded to the participants’ questions.
The theme for the second evening for the Bioethics Conference scheduled on January 21 is “Life, subject to conditions?”]]>
Adding to the current yellow vest protest in France, the report of the parliamentary fact-finding mission on the revision of the bioethics laws, contains provocative and tumultuous propositions, which ruin the safeguarding principles of French bioethics. Diametrically opposed to medicine and solidarity, they include: allowing transgenic embryos and post-mortem IVF, encouraging eugenics by widespread screening for disabilities prior to conception, in addition to prenatal and preimplantation diagnosis and sorting of embryos, as well as putting pressure on individuals at the end-of-life to obtain organ donations (refer to proposition 40).
The rapporteur, Jean-Louis Touraine has made a complete policy shift towards the right to a child to the disadvantage of the right of children to know their biological father, thus ignoring the complimentary gender roles of male and female for procreation. His proposal to officially recognize the intended parents in France, for children born abroad by surrogacy totally disregards the mother who gave birth, constituting a severe threat for the respect of women’s rights and dignity.
Tugdual Derville, Alliance VITA’s General Delegate speaks out:
«The disparity between the vigilant approach of the committee’s director and the rapporteur’s recommendations demonstrates the ludicrous exaggerations of these conclusions. Except for human-animal hybrids or chimeras, Jean-Louis Touraine has pulled out all the stops.This is a great loss for human dignity. Generally speaking, this new but superfluous report, at least demonstrates the outrageous and exaggerated ideas that some individuals purport for deregulating bioethical positions. Alliance VITA is more committed than ever to remain involved in this participative process on these vital topics which preoccupy French citizens. The voices of the most vulnerable deserve to be heard, even though VITA is aware that those who monopolize the discussion are everything but willing to listen. Only by demonstrating a steady and vigilant involvement can we hope to dissuade the French President from acting on the recommendations in this report. It’s up to us to vigorously protest against the obscene spending of public funds and energy for such infringements on Human Rights.”
On December 24 and 27, 2018 two decrees were passed in France which became effective on January 1, 2019 to “improve daily life for disabled individuals and their loved ones” by a “firm policy to simplify the paperwork”.
Thus since January 1, 2019 any adults who have been officially recognized as being disabled may retain this qualification and forthcoming eligibility for subsidies throughout life thanks to these simplified procedures: including priority in queues, parking, and transport. For disabled children the subsidies for education may now be granted until the individual reaches age 20.
On October 25, 2018, the Interministerial Committee for the Disabled agreed that disabled persons whose condition will not improve would receive life-long benefits, as well as for children up to age 20. Sophie Cluzel, the National Secretary for the Disabled lamented: “We have to stop asking French citizens to prove their disability 10 different times in life.This will significantly alter the process of continually providing proof (…)which previously resulted in mistrust.” This policy will also simplify the work for the 5000 professionals employed in the regional houses for disabled persons.
Prior to these 2 new decrees, the disabled person had to file a form to renew subsidies an average of 9 or 10 times throughout life; and for a child it had to be done every 12 to 18 months. Usually the first request was answered to after 1 to 20 years, depending on the multidisciplinary team’s opinion. Previously some proposals had been made to increase the time-frame for renewals, individuals still had to prove their disability on a regular basis. Out of the 4.5 million requests registered in regional offices in 2017 (an increase of 4.1% from 2016), half were renewals, with an average of a 4-month wait before receiving an answer.
Cyprien, Alliance VITA member who has been blind since he was born, speaks out:“This is really good news which will simplify our life! Before I reached age 20, my parents had to fill out numerous administrative forms every 3 years, and also provide a medical certificate from the ophthalmologist to prove that I was still blind!”]]>
Non-invasive prenatal testing (NIPT) will heretofore be reimbursed (390 €) by the French National Health Care system, according to the decree published in the Official Journal on December 27.
Three decrees which specify the conditions for NIPT were published last December in the Official Journal. The first decree specifies the standard operating procedures for screening and prenatal diagnosis, now adding NIPT whenever first trimester screening results indicate a high risk of Down syndrome. The second decree provides additional information on NIPT to future parents whose child may be at risk for Down syndrome. The third decree specifies the reporting protocol to the Biomedical Agency for any pregnant woman diagnosed as being at risk.
Already on May 7, 2017 a decree was published in the Official Journal which added NIPT to the list of screening tests for Down syndrome during pregnancy. Since May 2017, the French National Health Authority has been recommending NIPT. During the first trimester a maternal blood test is performed to analyze the baby’s DNA present in the fetus’ cells which circulate in the mother’s bloodstream. If the results are not clearly decisive, a second screening test is also offered free of charge.
Women whose fetus has a risk between 1/1000 and 1/51 are offered a sonogram to measure nuchal translucency and a blood test for serial markers.
According to the National Health Authority, out of a total of 800,000 pregnancies annually, almost 58,000 women could be screened, thus detecting 15% more babies with Down syndrome, while decreasing amniocentesis for measuring fetal karyotype by 25%. However amniocentesis would not be completely replaced by NIPT since it would still be automatically recommended for any positive test result or for risks measuring 1/50. Previously amniocentesis was only proposed if the risk was 1/250.
Alliance VITA deplores the increasing pressure, year after year, for screening for Down syndrome. Will anyone be able to escape such determination to avoid the birth of babies with Down Syndrome when France has now become the world leader in eugenics?]]>
On November 28, 2018 in France, the overwhelming film “Save or Perish” was released. The film progressively unveils a fireman’s challenge, and that of his wife, after he has been burned and disfigured in a horrible accident.
In the beginning Franck is portrayed as being a completely dedicated, professional and proud firefighter, studiously preparing to pass the difficult exams to become a fire chief. Pierre Niney plays the role of Franck, and Anaïs Demoustier plays the role of his wife, who has just given birth to two little twin girls.
When speaking about her husband, Cecile affirms that his job has helped him forge his character, how he feels proud and happy to serve others and save lives, either by extinguishing fires, rescuing the homeless on the sidewalk from hypothermia, or sometimes confronting the aftermath of desperate suicide cases, collecting cadavers’ body parts from under the subway.
First and foremost this film is a tribute to firemen, to their tough daily job of assisting vulnerable individuals and to how they perform these tasks with courtesy and respect.
The whole family suffers a traumatic experience when Franck proceeds to rescue two of his colleagues. He also becomes trapped in the burning building, and although he miraculously survives, he is badly burned and his face is horribly mutilated by the fire.
After 6 months of coma, Franck painfully re-awakens, filled with revolt and anger. He feels like a monster that no longer deserves his wife, and even contemplates putting an end to his life. This period is agonizing for Cecile: she goes through arduous phases of rejection and she blames herself for not being able to love him anymore. They decide to separate for a while and Cecile returns home to live with her parents.
In some scenes we become acquainted with the hospital staff, with their admirable dedication and sensitivity. Nathalie, a nurse full of attention, affirms to Franck that he is resourceful enough to pull himself out of the situation. The film depicts a beautiful and trusting relationship between the caregiver and the patient, so precious for a man who is extremely wounded, at a time in his life when he is experiencing inordinate suffering.
However, the turning point in the film doesn’t occur until Frank is literally hanging from his balcony, intending to put an end to his life. At this dramatic moment while he’s still on the balcony rail, he envisions his own dead corpse, a fireman’s body, destroyed and shattered below on the sidewalk. This is the moment when something clicks inside him. He realizes that the meaning of his life is to be with his wife and daughter; that he was not put on earth to perish, but rather to serve.
Until now, he had closed himself up in the role of a desperate victim. Suddenly he realizes that his family is counting on him and waiting for him. At this point he leans not towards the abyss below, but towards life.
Following 24 painful operations, he also decides to stop chasing his former self, to accept himself as he is now, with his face scarred by the indelible burns. And for the first time, he kisses his two twin daughters.
He decides to “win his wife back” and he goes to a school party disguised as a clown to surprise his wife and children; and then tell them how much he loves them.
The film depicts a couple who must become reacquainted with each other, and learn how to truly love each other. Cecile previously loved Franck as a magnificent fireman, and presently she accepts his vulnerability. However she can only do this once he himself has accepted his own vulnerability, and the fact that he is no longer the fireman he was before.
This is a film depicting a very honest and profound look at humanity, which invites us to examine our own vulnerability, to take the road we all need to follow, to accept ourselves and to love ourselves just the way we are, with our limitations and our imperfections. These are the inherent requirements to genuinely love others and accept to be loved.
Contributed by Didier Berge]]>
On December 19, 2018, the House of Deputies in India, the Lok Sabha, adopted a bill prohibiting surrogacy.
In order to protect women from being exploited, the draft law on “commercial” surrogacy has a provision for a jail term of up to 10 years.
Since 2002, when India authorized surrogacy, repeated national scandals reported in the world press have led authorities to take protective measures against surrogate factories that exploit the poor, and sponsors who abandon babies who do not meet their criteria. The bill, introduced by the Indian Health Minister JP Nadda, was passed in August 2016 by Narendra Modi’s nationalist government and then “it was referred to the parliamentary standing committee on Health and Family Welfare in January 2017″.
India thus joins other countries such as Thailand, Cambodia and Nepal that have significantly curtailed the practice of surrogacy.
Surrogacy will be supervised and only available to Indian couples with medically proven infertility, who have been married for at least 5 years. This constitutes a first blow. In New Delhi, the Director of the Center for Social Research Ranjana Kumari explains that until now, due to the easy access to surrogacy, adoption had not attracted many people. She declares: “this may possibly boost the dismal adoption figures in India.”
Caroline Roux, Alliance VITA’s Assistant General Delegate and member of the collective group initiative “No Maternity Traffic” speaks out: “I’m concerned about the victims of surrogacy, whether they are women or children. It is a relief to see the Indian authorities take measures to drastically restrict surrogacy and its inhumane financial profits. India’s ban on “commercial” surrogacy is a very important step and it helps promote the global awareness that surrogacy is inconsistent with Human Rights. Nonetheless India has not yet gone the entire way to forbid all forms of surrogacy on an international level. We look forward to seeing the same determination from the United States. With its ultra-liberalism, the US is the major provider of surrogates for commercial agencies that carry out the procreation business with impunity.”]]>
A decision has just been rendered by the Administrative Court of Appeal in Bordeaux, France on the delicate issue of paying compensation for the distress caused by the birth of a child whose disability was not detected during pregnancy due to a medical error.
Following in vitro fertilization, Mr. and Mrs. R gave birth to 3 male triplets in 1999. Two of the triplets who are severely disabled were diagnosed with Becker muscular dystrophy in 2005.
Mr. and Mrs. R. filed a claim in their own name and on behalf of the healthy sibling for compensation for damages suffered due to two disabled boys, citing hospital medical errors for not detecting the pathology before birth.
By judgment of 4 December 2018, the Bordeaux Administrative Court of Appeal held that the hospital center that had followed Mrs. R … ‘s pregnancy had committed a serious error which deprived the parents of the possibility of performing a prenatal diagnosis, considering their family history, and therefore a chance to give birth to children whithout a genetic defect, either by giving up the pregnancy, or by benefiting from a prenatal diagnosis with selective interruption of pregnancy.
On December 4, 2018, the Administrative Court of Appeal in Bordeaux ruled that the medical center had committed a serious error during Mrs. R’s pregnancy. The parents were not offered the opportunity to have prenatal diagnosis performed, considering their family antecedents, and therefore were not given the chance to have children without the genetic defect, either by abandoning the pregnancy, or by performing a prenatal diagnosis and a selective abortion.
The Court therefore condemned the hospital to pay Mr. and Mrs. R. 30,200 € each in compensation for personal injury, in addition to 10,000 € to their son F. for moral compensation and the difficult living conditions due to his brothers’ disability.
In so doing, the administrative court broadened the scope of Article L.114-5 paragraph 3 of the Legal Code for society and families, to include the sibling, when it was previously only applicable to the parents.
Although a child with severe disabilities is undeniably a source of hardship and even suffering, not only for his parents but also for the whole family, is it legitimate to broaden the scope of the law?
Since March 4, 2002, the French law known as “anti-Perruche” rightly asserts that compensation for special burdens due to disability is a matter of national solidarity, specifying : “No one can claim an injustice just for the fact of having been born.” However, the law recognizes that the parents of a disabled child have a special right to compensation for “moral damage and disruption in their living conditions“, on behalf of the doctors who didn’t offer them an opportunity to end the pregnancy. But until now, other family members, including siblings, were not included in the compensation rights.
To give a disabled child the painful and brutal message that he should not have been born is already distressful. But to affirm that siblings also have a “right to compensation”, when they were not given a choice whether to accept their sibling or not, constitutes a questionable interpretation that could stigmatize even more disabled people.
The French State Council of State may have to decide whether this judgment rendered on December 4, 2018 should be appealed.]]>
An unprecedented study published in the British Journal of Medical Ethics, denounces the misuse and easy access to what is euphemistically called “Medical Aid in Dying” (MAiD), which in reality implies resorting to euthanasia and assisted suicide in Quebec. The authors claim that this is sometimes applied abruptly with little or no effort to mitigate or relieve the patient’s suffering through non-lethal medical means. Thus, some patients requested MAiD without being informed about palliative care options for end-of-life care.
Between December 2015 and June 2017, researchers Lori Seller and Véronique Fraser from the McGill University Health Center, and Marie-Eve Bouthillier, from Laval, evaluated 80 cases of patients requesting MAiD in two Quebec hospitals and one long-term care center. The authors of this research study explain that “When MAiD was legalized in Quebec three years ago, the clinical guidelines recommended that MAiD be approached as a last resort when other care options are insufficient.”
The researchers revealed several paradoxical situations. One in five patients had not signed any advance directives, that is for instance do-not-resuscitate orders for their end-of-life conditions. The bioethicist, Lori Seller, believes that “If palliative care was initiated sooner, patients may benefit from it, but the issue remains as to whether there would be less recourse to MAiD. We raise the question without having an answer for now. It would require further research.
These findings have appeared at a time when the number of euthanasia cases has soared. According to a report recently submitted to the Canadian National Assembly by the Commission for the End-of-Life, there were 845 cases between 2017 and 2018 compared to 638 cases the previous year. The report revealed that in the past 3 years, the legal requirements were not respected in 5% of the cases, and several cases were also cited where MAiD requests were filed even before proposing palliative care.
Physicians appear to be responsible since, in 29 cases, the physician is not impartial in his explanations to the patient about the criteria for requesting MAiD. In 9 other cases, the physician who did not practice MAiD was not sufficiently careful in verifying the patient’s health status, pain level, and adequately informed consent. Five patients were not suffering from an incurable disease, in two other patients were not at the end-of-life. For 17 other cases, the stipulated guidelines for access to MAiD were not followed. The commission thus questions the lack of clear communication regarding end-of-life care.
Last May, the College of Physicians warned that patients would turn to euthanasia due to inadequate palliative care services. Palliative care physicians have renewed their urgent appeal to upgrade palliative care which is under developed in Québec.
Alliance VITA has repeatedly emphasized the inherent dilemma of claiming to develop palliative care, while simultaneously legalizing euthanasia and terminal sedation. This inevitably leads to conflicts since these two approaches are contradictory. Palliative care is incompatible with euthanasia. The warning signs observed in Quebec demonstrate that these procedures lead to a dead end.]]>
In Brazil, the first baby was born following a uterus transplant from a deceased donor, according to an article published last Wednesday in the British medical journal the Lancet.
Born one year after the transplant, and still healthy at the age of 7 months, this is the first uterine transplant from a deceased donor to result in a live birth.
The first childbirth following uterine transplantation from living donors occurred in Sweden in 2013. In total, there have been 39 transplant procedures of this kind in the world, resulting in 11 live births so far. In France, the first uterine transplant is scheduled for 2019.
The operation took place in September 2016. The recipient of the uterus was a 32-year old woman born without a uterus. This is known as the Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. The 45 year-old-woman donated multiple organs when she died from a stroke. The uterus was removed from the donor and then transplanted into the recipient in surgery lasting 10.5 hours, then followed by arduous immunosuppressive treatment to prevent transplant rejection.
In reality, these complex and risky operations do not restore fertility. In vitro fertilization was performed and it was not specified whether the oocytes were those of the woman or those of a donor…]]>
Charged with human trafficking for serving as surrogate mothers on behalf of Chinese clients, 32 Cambodian women have just been freed from detention after agreeing to keep their babies.
An official at the Cambodian National Committee for Counter Trafficking in persons (NCCT) at the Ministry of Interior told French Press Agency (AFP): “They have promised to raise their own children and not to put them up for sale.” In addition, he declares that if the women do not respect the terms of the agreement, they’ll risk a penalty of a minimum of 15 years imprisonment. In his opinion, they were freed on “humanitarian grounds“, since many of them were pregnant.
Because surrogacy has been banned in Cambodia since 2016, the young women who were arrested last June during a police raid in Phnom Penh, will still be tried in court, along with 5 employees accused of being intermediaries in managing the trafficking business.
The surrogacy business boom occurred when China eased up on the one-child policy. Since approximately 90 million Chinese women now have the right to have a second child but are no longer of child-bearing age, and the law prohibits surrogacy, couples who can afford it, have turned to foreign surrogacy networks. South-East Asia is the most popular destination for surrogacy, since there are no restrictions for singles or same-sex couples. In addition the young women are often facing financial difficulties and the medical costs are low.
Surrogacy in this region of the world has progressively been banned, following numerous scandals and criticisms. In 2015, it was banned in Thailand, and two years ago Cambodia also outlawed the practice, partly because of the increasing demand. Only last month, eleven surrogate mothers were arrested in the country.]]>
“The value of life” is the theme chosen by Alliance VITA for its’ 2019 Bioethics Conference. On four successive Mondays from January 14 to February 4, participants may attend live presentations by videoconference, debates and round table discussions on current bioethics issues in over 140 cities throughout France and abroad.
A new bioethics bill will soon be tabled by the French government, thus the symposium will host scientists and specialists to discuss crucial issues, including:
Should we allow scientific specialists to manufacture human beings, regardless of the cost? Is every human being’s life worth living? How can we show the value of the most vulnerable individuals? Can mankind be protected against outrageous marketing pressures?
For the event, this year’s poster announcement shows a youngster being weighed on a balance. This implies that multiple issues will be addressed in an unprecedented manner: the desire to have a child, artificial reproduction, surrogacy, commodification of the human body, disabilities, dependency, ageing, end-of-life, etc.
Speakers from Alliance VITA include Tugdual Derville, François-Xavier Peres, Caroline Roux, Blanche Streb and Olivier Trédan, in addition to :
Michael Lonsdale, actor
Olivier Rey, philosopher,
Clotilde Noël, who started the “Fallen from the Nest” Community,
Maître Adeline le Gouvello, lawyer from “Jurists for Children“,
Xavier Mirabel, oncologist,
Benoît Clermont, and his wife Marie-Axelle, author of “Gaspard, Between Heaven and Earth”,
Bertrand and Gaëlle Lionel-Marie, National Bioethical Officers for the French Catholic Family Association,
Sophie and Cédric Barut, authors of “I’ll be back before nightfall”,
General Henri Marescaux, founder of an association to help prostitutes.
More guest speakers or experts will speak locally.
Over the past 5 years, more than 35,000 people have already participated in Alliance VITA’s Annual Bioethics Conference, thus making it the leading national bioethics event.
For more information and online registration: http://www.universitedelavie.fr/
Almost 3 years after the Clayes-Leonetti law was voted, on Wednesday, November 28th, the French National Center for End-of-Life and Palliative Care (“CNSPFV”) published a report which provides an evaluation of the implementation of the continuous and deep sedation until death (CDSUD).
Entitled “Difficulties encountered in implementing continuous and deep sedation until the patient’s death” the report is based on approximately 15 hearings, including that of a Belgian doctor. However, the French Society of Accompaniment and Palliative Care (“SFAP”) was not even auditioned. This report should therefore be considered with caution since this is not a scientific report nor an objective analysis.
The report includes seven incongruities:
The continuous deep sedation until death (CDSUD) is a new legal quagmire which has complicated the possible use of end-of-life sedation instead of making it easier.
Amalgams are still prevalent between euthanasia vs. continuous deep sedation until death.
Palliative care personnel have been delegated to implement continuous deep sedation, although they may not consider this care to be appropriate for their patients at the end-of-life.
The fact that the patient himself may request continuous deep sedation blurs the roles between doctors and patients and could be ethically questionable.
There is a risk that time-frame between the patient’s request and the physician’s implementation may not conform to the good clinical practice guidelines.
No measures have been taken to facilitate this type of sedation for general practitioners in urban areas, faced with insufficient treatment, logistics, information and training, as well as organizational and personnel constraints.
There are still huge disparities from one care unit to another, depending on the sites and the medical particularities.
Claire Fourcade, as vice-president of the French Society of Accompaniment and Palliative Care (“SFAP”) which tallies 10,000 caregivers and 6000 volunteers, responded: “In its report, the National Center implies that continuous deep sedation was the unique objective. But in practice, the goal is to comfort patients with all the means we have available, not to establish a ‘quota’ for sedations”. She notes that it is regrettable that the report was written without consulting the SFAP”. She asserts: “The medical teams are ready to use the available sedation techniques, whether deep or not , reversible or not, whenever it is necessary”.
As the Head Physician in Palliative Care at the Languedoc Medical Center, in Narbonne, Claire Fourcade also emphasizes the need to clearly make the difference between sedation and palliative care: “According to the law and the National Health Authority there is a clear distinction between the two. And today, confusion is maintained by those with a hidden agenda or those who are misinformed on the issue. “
In April 2016, many concerns were raised within palliative care settings when Véronique Fournier, who is partly responsible for this report, was appointed on the sly to chair the National Center for End-of-Life and Palliative Care. She is in favor of practicing what she refers to as “palliative euthanasia“, an formula continues to foster great confusion.
Alliance VITA has repeatedly warned against the risks of euthanasia in the interpretation of the Claeys-Leonetti law. In an endeavor to remove some ambiguities, in March 2018, the French National Health Authority (“HAS”) issued recommendations for good clinical practice for implementing “continuous and deep sedation until death”.
These recommendations specify strict conditions and guidlines for implementing this type of sedation.Nonetheless, in their statement the “SFAP” emphasized: “When dealing with intricate human situations, sedative practices cannot be standardized nor curtailed to following a protocol. They vary immensely, from anti-anxiety drugs and minor tranquilizers to continuous deep sedation until death, as specified by the 2016 law. These practices must be adapted to the specificneeds of each patient.”]]>
Kalin Bennett didn’t take his first steps until age 4, but now he has become the first player with autism to be recruited by the NCAA (National Collegiate Athletic Association).
When he joins the Kent State University basketball team next year, Kalin will become the first autistic student-athlete to earn a NCCA scholarship, a division of the NBA (National Basketball Association)
Kalin was diagnosed with severe autism which slowed his brain’s development and made social contact difficult. Approximately 20 – 25% of these children have limited ability to successfully communicate and interact with others.
The doctors diagnosed Kalin with this form of autism when he was very young, and warned that he would never walk. However, in spite of this prediction, he began walking at age 4, and started speech development at age 8. Kalin’s success is also due to his mother’s diligent endeavors, who insisted that he have therapy and remain in contact with other children.
Measuring 2.08 meters tall (6’10’’) and weighing 134 kilos (300 pounds); Kalin not only has great basketball skills, but also excels in mathematics and music. He wants to encourage others with disabilities: “I want to have an impact not just on the court, but with kids that are struggling with the same things I am. I want to use this platform to inspire other kids with or without autism. I want to let them know, ‘hey if I can do this, you can do it, too’”.
Kalin aims to become a professional basketball player.]]>
The recent birth announcement by a Chinese scientist is a bombshell in the world of artificial reproductive techniques.
Alliance VITA denounces the way some researchers have tested controversial techniques, whose safety and efficacy have not been proved whatsoever, in order to create genetically-edited babies, taking advantage of families who are already afflicted by disease. This foreboding signal from China comes on the eve of the Second International Summit on Human Genome Editing to be held in Hong Kong. If these alleged claims are confirmed, we can only hope that the international community will voice their outrage, to condemn these experiments, and take action to ward off any new regulatory violations.
Blanche STREB, Alliance VITA’s Director of Training and Research, Author of “Designer Babies- Towards a dystopian civilization”
“If this alleged claim is confirmed, it is an announcement that many scientists have feared for a long time: a bombshell exploding in the fragile international bioethical wall. The red line would have been crossed: a baby born from this technique is definitely an object, a guinea pig.
The scientist asserts that the each embryo’s DNA was checked, before being implanted in the mother’s uterus. However, it is impossible to check every individual cell, or even predict possible “collateral damage” in advance. It is impossible to perform clinical trials since each embryo is unique, with its own specific DNA. These cannot even be qualified as human clinical trials, but rather as directly experimenting on human beings!
While some embryos are being sorted and pre-selected in a crazy pursuit to design “perfect babies”, other scientists have deliberately decided to create embryos from scratch, then manipulate them, in a worrisome artificial reproduction frenzy to obtain “a baby at any price”, in defiant contempt of the most basic precautionary principle.”
On November 18, 2018, a report of experts was published on Vincent Lambert’s case. This expert medical report was ordered on April 20 by the Administrative Court in Châlons-en-Champagne, France. This followed the announcement on April 9, 2018 by the Reims Medical Center of stopping treatment (hydration and nutrition) within a 10-day time frame, in opposition to Lambert’s parents’ wishes and prior to a decision rendered on their appeal to the court. The last medical report was in 2014.
Vincent Lambert’s condition has already been the subject of several judicial entanglements due to the ongoing family conflict and opposing viewpoints from his wife, his parents, siblings as well as his nephew.
According to the principal factors in the press reports, the medical experts have concluded that Vincent Lambert’s condition remains stable. They describe him to be in an “irreversible chronic neuro-vegetative state, and …unable to regain consciousness”.“Having extremely or totally limited capacities (…) is affecting him to an unacceptable point for himself, his wife and his legal tutor.”
Nevertheless, they note that Vincent’s care does not constitute “overly burdensome medical treatment” nor “unreasonable obstinacy”, but that his care is appropriately adapted for his “basic due care, (including nutrition, hydration, skin protection, elimination of waste, and necessary hygiene)”.
By refusing to qualify Lambert’s care as unreasonable obstinacy, the medical experts are referring to the 2016 French End-of-Life law known as “Claeys-Leonetti”. A major issue in this legal text concerns stopping treatment when a person can no longer express himself clearly. The French Public Health Code, in Article L. 1110-5-2 stipulates: “When the patient cannot express his will and, in order to refuse unreasonable obstinacy mentioned by Article L. 1110- 5-1, in the case where the doctor stops life-supporting treatment, the latter may implement deep and continuous sedation until death, combined with analgesia, to alter consciousness until death.”
The experts also point out that the current situation “does not call for any emergency measures” and that “there are facilities in France that can accommodate him until the end of life, if the Reims University Medical Center is unable to keep him for reasons other than mere medical techniques”.
Until now, the Court has refused Vincent’s transfer from the Reims University Medical University to a more suitable care unit.
A hearing must be held at the Administrative Court of Châlons-en-Champagne on December 19, before a final judgment is rendered on the parents’ appeal contesting the doctor’s decision for stopping treatment.]]>
VITA’s answer to incidents that have occurred in 17 cities when volunteers were launching the new VITA campaign “Keep Your Hands Off My Daddy” to alert and call for action.
On Thursday, November 15, at 1 pm, Alliance VITA peacefully launched its campaign to warn the public and call for action to protest against ART without a father. In accordance with the law, the VITA regional delegations had filed declarations prior to these gatherings in each of the 70 French cities, to lawfully exercise their freedom of speech and their right to protest.
Nonetheless, without filing any prior declaration and thus illegally, counter-demonstrations were organized via social networks, at the very same place where VITA demonstrations took place. Although active police containment and surveillance varied, the counter-demonstrators committed violent acts against both property and individuals by trying to steal or destroy campaign materials, making loud noises and cries to muffle campaign speeches, insulting and even molesting some of the participants. A court complaint will be filed for the incident involving an 8-month old pregnant woman who was slapped.
Present at the peaceful campaign launch at La Défense in Paris, VITA’s General Delegate, Tugdual Derville declares:
“First of all, I want to thank all the volunteers for their pacifist participation and commitment in launching this campaign. In 53 cities, our right to peacefully demonstrate was cordially recognized and received by those passing by. In defiance of the law, small groups of militant protestors in 17 cities tried to intimidate and silence us. I want to acknowledge and honor those participants who have endured screams, insults and even spitting or beating. This violence shows a peculiar way of thinking, dominated by a desire for unlimited power. This is exactly what we are protesting against in ART without a father. In several cities, the police themselves have admitted they were unable to control the violence of these groups. This is not a good sign for democracy. We are far from French President Macron’s promise of a “peaceful debate”! How can we accept that law-abiding citizens are being attacked by those who disrespect the law? Our peaceful tenacity remains unabashed. No one will benefit by giving up in front of pressure groups who want to ban the debate. We hope that all democrats, even those who do not share our convictions, will enthusiastically defend our right to express our opinions. As for VITA, we will not let these groups silent us.”
Faced with these attacks on freedom of speech, Alliance VITA has decided to:
take legal action wherever violent acts have been committed;
ask law enforcement officials how citizens’ rights to protest can be guaranteed, since prior filings of these declared gatherings were used against the participants to call for action against them;
intensify our campaign efforts for “Keep Your Hands Off My Daddy”
On Thursday, November 15, 2018, Alliance VITA launched its new national campaign “KEEP YOUR HANDS OFF MY DADDY!” simultaneously in 70 cities throughout France, to warn the public and call for action.
Alliance VITA’s national and regional teams including the national chief delegates: Tugdual Derville, Caroline Roux and Blanche Streb took part in the campaign launch at “La Défense” in Paris.
The campaign message “NoART, without a father” was simultaneously launched at “La Défense” in Paris and 70 other cities in front of the emblematic “Marianne” statue representing France, clothed in black and sitting near dark blue silhouette representing a little boy. Shouldering his book bag, this little one represents future children who would be unfairly and deliberately deprived of a father. At each site, a father delivered the campaign speech, emphasizing how paternal responsibility is essential for our society. It is mostly irresponsible to suggest that men should just donate their sperm without having the least interest in their offspring. These children would consequently be severed from any paternal reference point.
In Paris, gathered around a banner, and carrying signs “For tomorrow’s children” and “Keep your hands off my Daddy!” the participants distributed envelopes containing a campaign bracelet, and they will continue to distribute them to the public in the coming weeks. According to the survey commissioned by Alliance VITA at IFOP last June, 93% of the French believe that “fathers play an essential role for children“. During the current discussions aimed at revising the French bioethics law, several ministers have announced their intention to relinquish the criterion of medical infertility, and legalizing ART, at no cost to single women or 2 females living as a couple, without a male partner. Alliance VITA has therefore decided to alert the French at all cost.
In Paris, at the national press conference, Alliance VITA’s General Delegate, Tugdual Derville, announced: “Starting tomorrow, our VITA volunteers will begin distributing information and warnings to the French, in cities and railway stations. We not only intend to rally fathers but also those who support the complementary roles of fathers and mothers, as opposed to those who deny any differences between males and females. We will also solicit members of parliament. And most importantly, our online petition is now started, to request that French President Macron renounce continuing this ART upheaval. Artificially producing children without fathers would inevitably lead to surrogacy – using a woman’s body as an object – and thus result in a national reproductive business. This business would be very similar to totalitarianism, since it would be a State-held exploitation of women’s and children’s bodies. “
More and more disabled persons who were previously unable to walk are now using exoskeletonscalled “re-walkers” to get around.
Exoskeletons allow paraplegics to perform daily upright activities: get up from a chair, remain standing, walk and even climb stairs. It is fairly easy to use. It is a kind of highly technological armor which requires a technician’s assistance to be attached around the legs, chest and back. The person must continue to use crutches for a little time before being able to walk “normally”. The idea is to find the balance point.
Medical authorities in the United States have already approved this technology seven years ago. It has just been proposed to Anthony, a young Frenchman, who has been in a wheelchair since 2014. Since the device costs 80,000 €, Anthony started fundraising to accomplish his dream of testing and eventually owning the exoskeleton. “I hope to be able to buy one to use at home on a daily basis (…) I know it won’t enable me to walk like before, nor replace my wheelchair, but psychologically, it has become a real pleasure to be able to stand and move around. “
In addition, scientists at the Swiss Federal Institute of Technology in Lausanne have recently developed a new technology using electrical stimulation which enabled 3 paraplegic men to walk again. The three participants were 28, 35 and 47 year-olds who had been paralyzed for longer than 4 years as a consequence of an accident. After a few days of specifically targeted electrical stimulation, they regained partial control of their leg movements. Using supports, they were able to use a treadmill; and after long weeks of intensive rehabilitation, they were capable of walking, either with or without a walker. This ambulatory progress remained even after the electrical stimulation was stopped.
The Swiss research team (30 specialists including neurosurgeons, neurologists, physiotherapists, engineers, neuroscientists, physicists), is now planning to launch a clinical test with about 20 patients suffering from recent spinal cord injuries. This gives significant hope to all paraplegics, including approximately 50,000 in France.]]>
Two unborn babies with spina bifida underwent in utero surgery by a 30-member team of doctors from the University College Hospital in London. Each operating procedure lasted 90 minutes, and the mothers and their babies are doing fine. The surgery was made possible thanks to participatory funding amounting to 450,000 €.
This is a “first” in the UK. Until now, British women had to travel to Belgium for this type of surgery during their pregnancy.
In Paris, 4 years ago, the teams in fetal medicine at the Armand Trousseau Hospital and the neurosurgery at Necker Children’s Hospital operated on a female baby in utero with this same disease.
At the University College London Hospital (UCLH), the lead fetal neurosurgeon Dr. Jan Deprest explains: “Operating in the womb involves making an incision, opening the uterus without doing a Caesarean section to give birth, exposing the spine and closing the defect in the spinal canal, then repairing the uterus to leave the baby safe inside.” She continues: “While neither intervention is curative, in fetal surgery, the defect is closed earlier, which prevents damage to the spinal cord in the last third of pregnancy”.
Spina bifida occurs when a baby is in the womb and the neural tube, the earliest form of the brain and spinal cord, is not properly formed, thus one or more vertebrae in the spinal column do not close all of the way.
The result is that the contents of the spinal column (spinal cord, meninges, nerves, etc) are not fully protected. This disease can be detected starting at the sixth month of pregnancy. In 80% of cases, abortions for medical reasons are proposed.]]>
In its report published on Thursday, October 25, the French Parliamentary Office for the Evaluation of Scientific and Technological Choices (“OPECST”) did not wish to comment on allowing Assisted Reproduction Techniques (ART) for single women and female couples, deleting the criterion of infertility. They declare this legal modification as being “driven by societal pressure” and not by scientific progress.
However, “OPECST” does warn that permitting broader access to ART will imply dealing with filiation issues, investment costs for additional staff and risks to result in a “shortage of gamete donors“. Nevertheless, Alliance VITA disagrees with “OPECST”s favorable opinion to create private gamete banks. The stage would be set with the door wide open for the procreation market place.
Tugdual Derville, Alliance VITA’s General Delegate states :
“It is understandable that “OPECST” does not decide on extending access to ART without the criteria of infertility and without a male partner, because it is a societal question and not an issue of progress which would normally be treated by bioethical laws. However in our opinion, discussing only about ART for “all” is focusing on the tree that hides the forest of issues that need to be discussed. Indeed, the genuine bioethical topics for “OPECST” are underestimated, albeit, they are crucial.
Firstly, we deplore that some authorities recommend trivializing the human embryos’ use as an instrument, OPECST wants to allow research which destroys embryos up until the 14th day. OPECST is more cautious for genetic and pre-conception testing. We lament its support for preimplantation detection of Down’s syndrome (Trisomy 21). Today these individuals are already the major victims targeted by this form of eugenics, and this Preimplantational Genetic Diagnosiswould endorse stigmatizing and rejecting those with this chromosomal anomaly. “
Even prior to the major associations’ hearing at the French National Assembly (Alliance VITA will only be auditioned on Wednesday, October 24th), Agnès Buzyn has already announced that the new bioethics bill will allow ART without a father, for single women and female couples.
Alliance VITA has decided to react vigorously to protect children’s rights and their best interests. In opposition to ART promoters, who demand to relinquish the criterion of medical infertility and exclude the father, Alliance VITA asserts that the French people are overwhelmingly and deeply attached to the father’s role, and for a child born via ART to be guaranteed the right to have both a father and a mother (IFOP survey, June 2018).
Tugdual Derville, Alliance VITA’s General Delegate states:
“Just a few months before the European elections, the French President cannot overlook the risk of provoking a clash in society due to deeply divided opinions. Macron cannot disregard the fact that only a small minority lobbies to relinquish the infertility criteria and accept ART without a male partner. This minority has already spoken out with masculine claims for surrogacy, although this practice essentially treats women’s bodies as instruments, exploited as suppliers of raw materials. Following Mrs. Buzyn’s announcements, our teams will organize widespread campaigns throughout France as early as November, to protect children’s rights and their best interests. ”
Upon request from the Minister of Solidarity and Health, for the second consecutive year, the French National Center for Palliative and End-of-Life Care (subsequently referred to by its French acronym: “CNSPFV”) has launched a public awareness campaign on October 15, for palliative care and the end-of-life. In particular, the communication focus targets those who are 50-70 years old.
After the first campaign conducted by “CNSPFV” in early 2017, a report subsequently published in February 2018 pointed out that 15% of general practitioners and 40% of the French population were still unaware of the existence of the recent “Claeys-Leonetti” law on the end-of-life.
The goal for this year’s campaign is to raise public awareness, and encourage thoughts and discussions about the end-of-life, and to eventually encourage writing advance directives. The campaign encompasses different facets: a TV campaign from October 14 to November 15 including questions: “How about discussing the aspects of the end of life?), information via social networks, material specifically for health professionals, and regional meetings…
The “CNSPFV” has also set up a new website intended to provide a reference information platform on palliative and end-of-life care that is adapted and accessible to everyone.
In addition, a new axis for the campaign is focused on supporting healthcare professionals who are most often concerned: general practitioners, nurses and care-givers.
As CNSPFV’s director, Dr. Véronique Fournier, initiated the campaign: “Beyond the issue of advance directives, the challenge is to collectively assuage the end-of-life topic”.
During the first “Let’s speak about the end-of-life” campaign in 2017, Alliance VITA warned against its ambiguity. The finding was that the official campaign presented outrageously simplified answers to complex issues, while amalgams still remained concerning deep sedation and euthanasia and assisted suicide. Based on feedback from its SOS end-of-life listening service, and assisted by its network of caregivers, Alliance VITA has edited a brochure on advance directives to clarify ambiguities and shed light on legal abuses. This practical guide can help the French public understand and write advance directives, while respecting medical ethics, and denouncing both euthanasia and unreasonable therapeutic obstinacy.
Since the 1st campaign in 2017, the French High Health Authority (“HAS”) published its recommendations of good practice in implementing “deep and continuous sedation until death” in March 2018, provided for by the Claeys-Leoetti law. These recommendations are largely prompted by the CNSPFV’s work, carried out a few months earlier, describing the strict conditions and modalities for implementing this type of sedation.
It is regrettable that the new CNSPFV website doesn’t publish this information on its page describing a practice which must remain an exception, rather than the status quo.]]>
The World Medical Association * (WMA) remains strongly opposed to euthanasia and assisted suicide.
Under pressure from the Netherlands and Canada, (the rare countries which have legalized euthanasia and assisted suicide), the WMA Executive Council held meetings throughout the past year to withstand their intense lobbying efforts and to discuss end-of-life dilemmas.
During the debates held in regional meetings (in Asia, Europe, America, and Africa) all kinds of euthanasia practice were firmly rejected.
During the WMA General Assembly, recently held in Iceland from October 3 to 6, 2018, these countries finally withdrew their highly controversial proposal.
_______________________* Established in 1947, the WMA is a global federation of 114 national doctors’ organizations. The WMA focuses worldwide on promoting accessibility and quality of healthcare by developing international standards and guidelines in the fields of healthcare, medical education, medical science, and medical ethics. The French National Order of Physicians is a member.]]>
On Friday, October 5, the Court of Cassation published its judgment ruling on the request for legal recognition in France to parent-child relationships for the Mennesson couple and their children born as a result of surrogacy. (Judgment No. 638 of October 5, 2018 (10-19.053) – Court of Cassation – Plenary Assembly).
Tugdual Derville, Alliance VITA’s General Delegate states: “The legal tragicomedy around this case has already gone on long enough. For 18 years, France has been facing the claims of a few victimizing adults. These outlaws have broken French laws, and are trying to impose their own law: surrogacy that turns women into objects, and imposes fragmented maternity and artificial bonds of filiation on the child. This new twist has the advantage of pushing us to show the French President that, contrary to what he asserts, ART and surrogacy are two parts of the same culture that deliberately produces a child, and severs him from his biological roots. “
To request an advisory opinion from the European Court of Human Rights, which has never shown much determination in preserving the rights of the child, equals to refusing to fulfill its role.
In California in 2000, the Mennesson couple not only employed a surrogate mother, but also a woman to donate her oocytes.
October 1st has been dedicated by the United Nations as the International Day of Older Persons (UNIDOP). This year, the UN is mobilizing to include older persons, in accordance with the guiding principle set forth by their Secretary General: “Don’t leave anyone behind”.
For several years, Alliance VITA has been reaffirming this commitment. For example by conducting the “Messages for Life” campaign, in the summer of 2015, they went out to meet older people who are often more isolated during the summer months. Volunteers helped collect information on older persons’ life experience, to be shared with younger generations. For the past two years, the VITA Youth teams have expanded the program to visit the elderly throughout the year. At the beaches during the summer, they also raise visibility among the vacationers, by acting as public ambassadors to promote solidarity between generations.
This valuable experience was shared in Strasbourg last June, at the European Youth Event “EYE”, organized by the European Parliament. A delegation from VITA Youth organized a workshop to reflect on the role of digital interaction to bridge the generational gap instead of widening it. More recently on September 22, in Brussels, VITA International participated in the JUBEL Festival, an exchange forum on European challenges. In partnership with the European Institute of Bioethics, Alliance VITA led discussions on the challenge of aging, while providing an opportunity for the VITA Youth to speak about their fight against exclusion and loneliness in old age.]]>
On Friday, September 28, the French State Council of State rendered a decision which upheld Toulouse University Hospital’s refusal to provide ART for two women without a male partner. They declared that distinguishing different treatment for them compared to a male-female couple is not contradictory to the principle of equality.
The two women filed an appeal at the Toulouse Administrative Court accusing the city’s University Hospital Center for ART of abusing their authority. The ART center had refused the women’s request for in vitro fertilization with a donor, based on their claim of infertility. On May 22, they filed a priority preliminary ruling on constitutionality, challenging the current bioethics law on the conditions allowing ART. The current law in force only allows ART for infertile couples or in situations risking a disease transfer to the child. The two women criticize the law as not upholding the legal principle of equality.
Indeed, since the constitutional reform on July 23, 2008, it is possible to contest whether a law already in force conforms to the Constitution: “The priority question of constitutionality is the right recognized to any individual, or party in a lawsuit, to contest any legislative provision contrary to the rights and freedoms guaranteed by the Constitution. This verification is pronounced “a posteriori”, since the Constitutional Council examines a law already in force.”
The State Council esteemed that it was unnecessary for this matter to be referred to the Constitutional Council, ruling that the Toulouse University Hospital had not violated the principle of equality, the very one which is “guaranteed by the Articles 1 and 6 of the Declaration of the Rights of Man and of the Citizen “.
In its decision, the State Council writes that: “the principle of equality does not preclude the legislator from regulating different situations in different ways and from derogating from equality for reasons of general interest”. Concerning reproduction, male-female couples have a different situation compared to same-sex couples. It follows in the provisions of Article L. 2141-2 of the Public Health Code that by reserving access to assisted reproductive techniques (ART) for male-female couples, who are alive, of age to reproduce, and/or suffering from a medically diagnosed infertility, the legislator understood that ART was intended to remedy a couple’s pathological infertility, without which they would be unable to have children. The difference in treatment, resulting from the provisions criticized, between male and female couples and same-sex couples is directly related to the purpose of the law establishing it and thus it is not contrary to the principle of equality. Thus, this issue which has previously been raised, is not serious.“
This decision comes at a time when heated debates have been taking place regarding greater access to ART: with a donor, without a male partner, for single women, or female couples. In opinion # 129 on the Bioethics Law revision, the National Consultative Ethics Committee emphasizes that this request is “in a demand for freedom and equality in access to ART to respond to the desire to have a child “. The State Council’s ruling demonstrates that it is futile to employ the principle of equality.
However, on September 25th, when the president of the National Consultative Ethics Committee was interviewed by the parliamentary information mission for revising bioethical law, he stated that the principle of infertility would continue to apply to the male-female couples whereas it would not be required for single women or female couples. If increased access to ART is legalized, this would be discriminatory for male-female couples, in addition to the discriminations against children who would be deliberately deprived of a father by the law.]]>
Alliance VITA disapproves of the recommendations given by the French National Consultative Ethics Committee (“CCNE”) which is willing to open the use of ART to couples without infertility pathology, whereas public authorities should be focused on fighting against medical infertility.
Alliance VITA believes that it is urgent to evaluate ART and its’ consequences, instead of permitting single women or same-sex couples to have access to it, which implies that children are deliberately deprived of a father.
Tugdual Derville*, Alliance VITA’s General Delegate states: “At the end of the French Bioethics Consultations French citizens confirmed their commitment to protecting the rights of the child. Yet the “CCNE”, which is largely composed of scientists, is still following the line of the scientific lobby. In fact, trivializing ART has deterred scientists from performing authentic research on infertility: especially causes induced by lifestyle – advanced age for pregnancy – or the degradation of environment, with endocrine disruptors. France is lagging behind in the field of therapies for restoring fertility. French citizens who are more frequently confronted with infertility, want this issue to be addressed, not a technical leap forward, which would overrule all the protective barriers for children. Instead of addressing this major public health issue, the “CCNE” is recommending “surrogacy for all”, which would change our country into a reproductive marketplace, unworthy of humanity. We warn our President that these announcements will incite massive citizen marches. “
Since there is not yet a national consensus, Alliance VITA reiterates its request for the government to maintain a status quo on surrogacy, and to establish a national priority to fight and prevent infertility.
In October, Alliance VITA will launch a widespread national awareness campaign to inform the public about the inherent dangers of a “surrogacy for all” policy. These exaggerated distortions would take us toward a reproductive marketplace where men and women would be treated as suppliers of raw material (sperm, oocyte, uterus) with the child as a product to be ordered or even “tailor-made”, as cited in “Custom-designed Babies” written by Blanche Streb **, Alliance VITA’s Director of Research and Development.
________________________
* : cf. Time for Mankind – for a Revolution in Human Ecology, Edited by Plon
** : cf. Designer Babies – The World of the Best, Edited by Artège.
“I’d like to extract us out of a trap that is contaminating the surrogacy debate these days. This trap is consequentialism.
I’d like to suggest an exercise to explain the word, and the trap that goes with it. First of all, let’s consider how good it is for each of us to exist, no matter how we have been conceived. Life is good. Every life is respectable, unique, and irreplaceable. To acknowledge this and accept its inherent consequences, is a proof of compassion.
Having done this, I suggest that we go into our genealogical background (whatever we may know about it): our parents, grandparents, great-grandparents and all our ancestors since the beginning of the human family … Here are my cousins – because genetics teaches us that we are all cousins – this forms a rather impressive gallery of family portraits. Now, we must acknowledge that at some level in this genealogy, everything has not always been easy regarding procreation. Common sense tells us that we were all born as a result of an accident, an injustice, a violence or even occasionally a criminal act… If some atrocities had not been committed in the past, many of us would not exist today! Does that mean that we should approve of these atrocities? Or else relinquish life? Of course not. If I shoulder any and all events that have resulted in my precious existence, I do not necessarily approve of them. This would be falling into the trap of consequentialism, which makes us approve of an act when its consequence is good. As if the end could justify the means.
Well, this is precisely what surrogacy promoters are currently doing when they exhibit the children born via surrogate mothers, to endorse this reproductive technique. A recent article from the “Parisien” was entitled: Born via Surrogacy: “Who can say that my existence is horrible?” But nobody says that. Especially not me. Every life is welcome. But this does not mean that we should approve of a reproductive technique which is a mistreatment exploiting and shattering motherhood. Since life is the result, according to this strange pro-life standpoint, this is a proof that the means are good. Well no! Otherwise, we would have to endorse right now artificial uteruses, and acts of sexual violence which led to conception! Every mistreatment must be refused and fought. And what was true for my ancestors still holds true for my own conception.
It is something difficult to admit for children born via surrogacy, because their love for life and for their parents is used to praise this reproductive technique which bears good fruit, i.e. their own life, but simultaneously turns them into innocent victims. A tragical trap that needs to be eluded! ”
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Editorial Tugdual Derville’s Editorial, September 21, 2018 (RCF)
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On September 19th, the Directors of the National Order of Physicians (“CNOM”) were heard at the French National Assembly by the Commission in charge of the revision the bioethics law.
The President of the Ethics and Deontology Department, Dr. Jean-Marie Faroudja, declared that he is not against allowing ART for single women or lesbian couples. He was quoted in ‘La Croix’ newspaper: “The physician’s role is to ease suffering, both physical and psychological. Since the yearning to have a child is painful, the doctor must be there to listen (…) If people are willing to extend access for ART, we think that it is up to our society to decide”.
Yet the Medical Academy had previously ruled in favor of “the best interests of the child” in a report submitted last July to the ‘CCNE’(French National Consultative Ethics Committee) which stated:
“Assisted Reproductive Techniques (ART) with a donor deliberately deprives a child from the essential and necessary relationship with 2 adults of different sex.”
The medical profession is completely divided on the subject of performing these techniques which are not medically indicated.
The president of the Catholic Center of French Doctors, Bertrand Galichon, thinks this is “a fundamental turn in the role of caregivers in our society. (…) Are we shifting to a point where doctors will have to meet society’s demands without any reflection whatsoever on their primary mission, which is to cure? “
The same question is raised by a young medical intern who deplores the insufficient training for students on bioethics subjects:
“Can infertility still be considered a medical pathology, when, in order to meet societal demands, doctors are requested to consider lesbian couples and single women, (who are physiologically unable to give birth) eligible to the same “medical treatment” and the same financial help for this treatment as a male-female couple who have been diagnosed as pathologically infertile? Isn’t such infertility a result of a social situation?]]>
Controversy recently erupted following media reports of a wealthy British couple who had conserved their son’s frozen sperm to produce a “designer grandson” by surrogacy techniques, following his death in a brutal accident at age 26.
Without obtaining formal consent from the individual concerned, it is illegal to harvest sperm post-mortem in the UK. In this particular case, the frozen semen was sent to California without prior consent for sampling, and then consequently used with donor eggs and a surrogate mother. The 50 year-old couple was able to choose the sex, and their grandson who is reportedly 3 years old currently lives in England.
The couple contacted Dr. David Smotrich, an American fertility specialist to create their “designer-baby” grandson. He reports: “They wanted a certain type of woman that their son might have been attracted to.” He continues by admitting “It’s very rare for a baby to be born from the sperm of a deceased person. I have only done this 5 times previously in my career. This couple was desperate to have an heir. They specifically wanted a male baby… “
This case marks an extreme example of transgressions in the reproductive marketplace and “designer babies”.
In France, the post mortem transfer of gametes or embryos is illegal. However, in 2016 the State Council gave authorization in an exceptional case: a Spanish widow was allowed to transfer her deceased husbands’ gametes to Spain for post mortem insemination where this practice is legal.]]>
In Belgium the Dutch-language newspapers: “De Standaard”, “Het Nieuwsblad” and “Gazet van Antwerpen” have recently published statistics for 2016-2017 for rescinding requests for euthanasia. Ninety-eight citizens withdrew their signatures for advance directives for euthanasia, a possible option in Belgium since 2008.
According to Gert Huysmans, President of the Flemish Federation of Palliative Care, people “write their statements when they are healthy, underestimating their instinct for survival which reappears when they are actually ill.”
In its September 6, 2018 newsletter, the European Institute of Bioethics emphasizes that in the past 10 years, there have been 382 individuals who have rescinded or withdrawn their advance directives for euthanasia.
“In 10 years, 170,942 advance declarations have been registered, with 128,291 files currently active, plus 42,651 statements which have now expired due to the 5-year validity period. Among the expired cases, 29,842 involved non-confirmed documents, while the remaining part was due to death by natural consequences (…). For the period of 2016-2017, according to their advance directives, 58 people had euthanasia performed by a physician. The other individuals were in a state of advanced unconsciousness or “irreversible” coma. ]]>
On July 17th, the Federal Control Commission for Euthanasia in Belgium submitted its biannual report to Parliament, again revealing a sharp increase in officially reported cases.
According to the Federal Control Commission for Evaluating Euthanasia (“CFCEE”), in 2016 there were 2,028 cases of euthanasia reported and while in 2017 there was nearly a 14% increase: 2309 cases. Since the law was voted in 2002, the number has systematically risen annually. The following chart published in the official report demonstrates:
Graph: Number of declaration of euthanasia by language: French, Dutch, Total
In most cases, those who resort to euthanasia are very elderly persons, with equal numbers of requests from men and women. Nevertheless, approximately one third of the requests are from those under age 70. Flanders has the highest number of cases of euthanasia (78%) compared to Wallonia (22%) with cultural reasons probably accounting for the disparity between the regions.
Generally, euthanasia is performed in the person’s home (45%), with 39% carried out in hospitals, while the rest are performed in nursing or retirement facilities. Most requests originate from patients with cancer (64%). The report states that the remaining requests are associated with “a combination of several conditions (multiple pathologies)”, and 15% of these individuals are at the end of life. Approximately 40 annual requests are for persons with mental deficiencies or behavioral disturbances; decisions which are often debated in terms of discernment and autonomy.
Since February 2014, Belgium is the only country in the world to legally allow euthanasia of minors without setting any age limit. In the period of 2016 – 2017, three acts of euthanasia on minors were performed on 2 children in Flanders and 1 child in Wallonia. The children were 9, 11 and 17 years old. The commission’s report stated that these 3 minors “each suffered from incurable and particularly serious conditions that would result in death within a short time-frame”.
Some parliamentarians and some doctors in Belgium are concerned about this escalating rise in euthanasia.
But euthanasia supporters such as Jacqueline Herremans, president of the Association for the Right to Die with Dignity (“ADMD Belgium”) and also member of the Federal Control Commission (“CFCEE”) evoke satisfaction. She declares: “Euthanasia has clearly become an ordinary everyday practice. This increase could possibly be explained by the fact that the law passed in 2002 is now more well-known by the generations who are most affected, and that the information is more widely available.”
There is no official mention of any instances of abuse being observed. The report concludes: “The Commission considered that all the declarations received met the essential legal requirements and no cases were forwarded to the public prosecutor. The Commission esteems that in the past 2 years, this practice has not resulted in any major difficulty or instance of abuse requiring legislative procedures. ”
However, in reality, major controversies have emerged in recent months concerning the legitimacy of certain acts of euthanasia. A member of the Federal Control Commission even resigned in protest against a very contentious case.
For an overview of statistics, legislations and instances of abuse, refer to our report:
[su_button url="https://www.alliancevita.org//en/2017/06/belgium-15-years-after-legalizing-euthanasia/" target="blank" style="3d" background="#FF0066" color="#ffffff" size="6" center="yes" icon="icon: arrow-circle-right" text_shadow="0px 0px 0px #000000"] For an overview of statistics, legislations and instances of abuse, refer to our report: “Belgium: 15 years After Legalizing Euthanasia”[/su_button]]]>
Following the State Council’s report, Alliance VITA challenges French President Macron to defend children’s rights which have been heretofore sidelined. In fact, the State Council intends to align with societal pressure concerning procreation instead of protecting the best interests of the child.
If French law permits this new type of filiation with 2 mothers, these children will be afflicted with a serious, definite discrimination of their civil status, without any paternal genealogy registered.
It is shocking that a group responsible for counseling the governmenton procreation subjects consents to adults transgressive demands from a small minority, instead of assessing an infertility prevention policy, (including environmental and behavioral causes). If they allow ART to be treated in a trivial manner, there will be an impact on children’s rights.
Tugdual Derville, Alliance VITA’s General Delegate states:
“These new recommendations give the impression that the group has little concern for legal coherence and justice for the most vulnerable. As if political pressure forced them to go back to the previous decisions… How can the principles which were claimed when the law was revised in 2011 to protect children, all disappear so suddenly? “
The State Council recommended avoiding “the risk of ceding to the least ethical position “, and to maintain “the basic requirement for a child to have a family with a father and a mother” and not to “intentionally create a child without a father, which cannot be considered to be in the best interest for the unborn child.” This is the same consternation if the State Counsel recommends allowing research on 13-day old embryos. Such bioethical policies based on a downhill slope can’t make our society safe.”
On a point which deserves adjustment, Alliance VITA notes that the Council of State makes an absurd proposal that does not meet the demands of children born by medical assistance with donor, tested by the anonymity of gamete donation and seeking of their origins. This quest is tackled on tiptoe, by a proposal for access of non-identifying data subject to the consent of the donor and the parents. It’s scientifically absurd and virtually derisory; because nowadays, nothing can hinder a child from having access to his origins.
Alliance VITA continues to insist that the main principles governing French and International law must be respected, in particular Article 7 of the Convention on the Rights of the Child, which states that every child has “the right to know his parents and be raised by them as far as possible.“
Alliance VITA intends to participate in mobilizing efforts for bills to be passed in accordance with the child’s best interests.
In its latest epidemiological bulletin, dated July 3, 2017, the French Public Health Agency, addressed the issue of “Reproductive Health and Endocrine Disruptors“.
This alarming report confirms worrisome data on increasing infertility, already published in other reports. The overall results “reflect a generalized deterioration of male reproductive health in France, consistent with the international literature“.
Environmental factors and exposure to toxic substances, such as some endocrine disruptors for example are highly implicated.
Genital malformations, sperm quality, and the incidence of testicular cancers were evaluated.
The quality of semen is in free fall: sperm concentration has dropped by 1.9% annually, or nearly 32.2% in the past 15 years. The number of morphologically normal spermatozoids is also decreasing.
Unfortunately, testicular cancer has been increasing by 1.5% per year. In the male reproductive system, the absence of one or both testicles in small boys has increased in France by 2.6% per year. This is caused by insufficient hormonal permeation into androgen which may result from the mother’s exposure to endocrine disruptors during pregnancy or trans-generational problems, due to toxic substance exposure in previous generations.
The phenomena of early onset of puberty or “precocious puberty”, with its possible negative consequences for health and fertility, have also been observed for several years with a strong regional disparity. This may be caused for multiple reasons, such as genetic or ethnic factors, unrelated to environmental factors.
The causes of infertility are multifaceted and complex. It is essential that studies continue and that they be followed by information and prevention campaigns. This is a major public health issue.]]>
Alliance VITA takes note of the State Council’s position which is detrimental to the child’s best interests, because it concedes to some citizens’ requests regarding reproductive techniques.
When reading the possible ART bioethical changes that have been appearing in the media, it is shocking that a group responsible for counseling the government consents to demands coming from a small minority of adults, seen as transgressive, instead of assessing an infertility prevention policy, (including environmental and behavioral causes). Besides they don’t even recognize that treating ART in a trivial manner, will have an impact on children’s rights.
Tugdual Derville, Alliance VITA’s General Delegate wonders:
“These new recommendations give the impression that the group has little concern for legal coherence and justice for the most vulnerable. As if political pressure forced them to go back to the previous decisions…How can the principles which were claimed when the law was revised in 2011 to protect children, all disappear so suddenly? The State Council recommended avoiding “the risk of ceding to the least ethical position “, and to maintain “the basic requirement for a child to have a family with a father and a mother” and not to “intentionally create a child without a father, which cannot be considered to be in the best interest for the unborn child.” Such bioethical policies based on a downhill slope can’t make our society safe. “
On a point that merits reconsideration, Alliance VITA notes that the State Council makes an absurd proposal which does not respond to individuals seeking their origins, after birth by ART from a donor, yet still confronted by the anonymity of gamete donation. This issue is feebly addressed, by proposing access of non-identifying data, but subject to the donor and the parents consent. This is scientifically absurd and practically derisory. Nowadays, nothing can hinder one from having access to his origins.
Alliance VITA continues to insist that the main principles governing French and International law must be respected, in particular Article 7 of the Convention on the Rights of the Child, which states that every child has “the right to know his parents and be raised by them as far as possible.”
Alliance VITA intends to participate in mobilizing efforts for bills to be passed in accordance with the child’s best interests.]]>
On Friday, June 15, with several health professionals, Israel Nisand, President of the French National College of Gynecologists and Obstetricians, launched a “solemn appeal” to the government to fight against mass distribution of pornography to which children and adolescents are exposed.
An increasing number of health professionals recognize and are confronted with this problem. They demand that the existing French law which prohibits pornography for those under 18 be enforced. Israel Nisand also deplores “Today businesses have the upper hand. But internet providers cannot hide behind the free Web access; they must still protect minors. ”
Smartphones have increasingly given youth widespread access to free pornographic images and movies, hidden from parental supervision.
This exposure may even start in primary school, and may sometimes be forced on students when a friend obliges him to look, or when a window unexpectedly pops up.
Already in 2002, a report from the Ministry of Culture and Communication declared “When a (young) child receives raw and brutal pornographic images, his brain feels confused about the taboos, and this has the same effect as being sexually abused”. According to Professor Israël Nisand, “pornography transmits the misconception that sexual performance is measured. Women areonly considered as objects. Boys have no concept of what consent means.” This wide consumption of pornographic images also corresponds to an increase in child-on-child sexual assault, as detailed in the press release from French National College of Gynecologists and Obstetricians.
The gynecologist, Ghada Hatem, deplores “We see so many teenage girls who do not even understand their own bodies;manipulated by their boyfriends who make them do things they don’t agree with“. Through the sex education classes she gives in Seine-Saint-Denis, she became aware of the widespread access to these films. In her opinion, these films have become a reference model for intimate relations between sexual partners. Ghada Hatem speaks of her experience at the Women’s House, which helps young girls who are victims of abuse in Seine-Saint-Denis.
Several recent studies show the increasing prevalence of porn among young people. On March 20, 2017, an IFOP study commissioned by “OPEN” (Observatory of Parenting and Digital Education) was published. It focused on “the prevalence of pornography among teenagers and its influence on sexual behavior” and the figures are quite alarming. An Opinionway survey, published in April 2018, reported that 62% of young adults have viewed porn images before age 15, with 11% of them being exposed before age 11. On June 8, 2018, an IPSOS poll, published by the Foundation for Political Innovation, emphasized this fact. It revealed that 21% of the 14- 24 year-olds surveyed watched porn at least once a week.
The French National College of Gynecologists and Obstetricians therefore calls for the existing law to be enforced to protect minors via information and awareness campaigns for children, adolescents and parents, and to provide widespread informative sexual education in schools. Professor Nisand also blames porn websites and proposes to force them torequire consumers to give their credit card details before viewing films, or be penalized with a heavy fine.
The question is whether the political commitment will follow through. The government has made announcements over the past few months. On November 25, the International Day for the Elimination of Violence against Women, President Macron unveiled a government strategy which included fighting against children exposition to porn on Internet. He announced that he would like to build on various bodies, and extend the High Audiovisual Council’s authority over social networks, video games and online porn to control “content which could lead to violence against women“. A task force has been established at the French Health Ministry.
If the awareness that pornography seriously abuses children and women is to be beneficial, it must also take into account the fact that it is detrimental for men as well.]]>
Published on June 29, 2018 a DREESstudy (French Department for Research, Studies, Evaluation and Statistics) analyzes the impact of parental separation on children entering adulthood.
At the end of 2014, there were 1.4 million young adults aged from 18 to 24 whose parents had separated, meaning 1 in 4 of young adults.
For more than 80% of these young adults, the separation of their parents took place before the age of 18. The “DREES” study observed that residing with only one parent distorts the relationship with the other parent. For example, almost one third of those whose parents are separated no longer have a relationship with one of their parents, most often their father (27% out of 31%).
When there is no longer any contact with one of their parents, 49 % of these young adults report that it is related to the separation, with only 14% citing geographic distance from the parent as a cause.
Young people with separated parents are more likely to leave the parental home than others, especially if the parent with whom they lived after separation had a child from a new union. 45% of young people whose parents are separated continue their education, compared to 53% of those whose parents are in a relationship. The length of education of 18-24 year old’s whose parents had separated before their majority decreased on an average from 6-12 months. They are more often unemployed or inactive. Unless the separated parents have maintained a good relationship, they are likely to receive less education. If they continue their education, young people with separated parents remain closer, and more often cohabitate with their partner.
Paternal relationships are particularly affected by separation. Among these young adults, 25% no longer have any contact with their father. For those who continue to see their father, 40% report experiencing stress if there are step-children involved or newborn children from the union. “Whatever the living situation following separation, girls are more likely to experience a stressful paternal relationship.” Alternating residences and staying with the father are slightly more frequent for boys (21%) than for girls (16%). When these young adults of separated parents do have discussions with their father, they talk less to him about money, leisure, politics, education, culture, daily life, their love life or sexual activities than other young people.]]>
On June 26, 2018, two MP’s were designated to co-pilot an informational task force for revising the Bioethical law: Jean-Louis Touraine (“La République En Marche” party) and Xavier Breton (Republican party).
This task force comprises 35 members from different political parties. Their work is expected to last 6 months, or until the end of 2018, when the bill will most likely be filed. Although both deputies are very committed to bioethics, Xavier Breton (president for the task force) and Jean-Louis Touraine (rapporteur) have radically different viewpoints.
Xavier Breton, MP for the Ain region, and member of the parliamentary group “Entente for the Family”, asked for this task force to be established. Last April, a letter co-signed by 56 deputies was addressed to the President of the Assembly requesting that an informational task force be designated because “revising the law of bioethics evokes complex and sensitive subjects”. Although unfavorable for allowing female couples access to ART, Breton stated: “Before starting a controversial debate, take time to listen, to ask questions about the issues in a very precise manner, especially since there are new members in the National Assembly who need to be informed “.
His task force co-pilot, Jean-Louis Touraine, deputy in the Rhone region and a medical doctor, is in favor of legalizing euthanasia and assisted suicide as well as for extending access of ART and legalizing surrogacy. “Work will begin now, ensuring that all opinions are respected,” he said.
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Further details:
Since mid-May, at the National Assembly, the Social Affairs Committee and the Law Commission had been performing similar tasks: hearings on various topics ranging from genetic research to ART. (Click here for the content of the previous hearings regarding “ART and society”). Now, the informational task force will study the bioethical issues and the previous hearings. When the bill is added to the Assembly’s schedule, work by the committee will be resumed.
The young 14-year-old Inès, who had been in a coma for one year, died recently when mechanical ventilation was disconnected. On January 5, 2018 the doctors recommended this decision, which was validated by the Council of State. Treatment was discontinued on June 19, 2018, against the parents’ wish.
On June 22, 2017, Ines had a cardiac arrest at home, due to her rare neuromuscular disease: autoimmune myasthenia gravis. The ambulance emergency squad resuscitated her and admitted her to the University Hospital in Nancy, where she remained unconscious but in stable condition since then, via artificial ventilation and gastric tube feeding.
On August 3, 2017, the parents were informed in writing of the physician’s decision to extubate Inès and stop mechanical ventilation, after having implemented the collegial procedure provided for by law, judging that it was now a situation of “unreasonable obstinacy”. However, they agreed not to enforce the decision against the parents’ will.
The parents then filed several different appeals. In January 2018, the Council of State’s report stated that “according to the report established by three medical experts, carried out on request of the administrative court in Nancy, the neurological prognosis of the child is even more severe, she is in a persistent vegetative state, unable to communicate, the irreversible nature of the neurological lesions being certain in the current state of science “. As a result, “considering the current knowledge in medical science, continuing treatment could be characterized as unreasonable obstinacy”. The European Court of Human Rights came to the same conclusion.
The date of Tuesday, June 19th, was chosen to disconnect the respirator, which was to be accompanied by highly qualified palliative care. This procedure is a tragic and painful experience for loved ones. The parents attempted to postpone the deadline, which was finally postponed until late afternoon. The young girl died 40 hours later on Thursday morning, June 21st. Security forces had to restrain both parents from interfering during the discontinuation of the respirator.
The French “Inspectorate General of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives suggestions for assisting medical teams and families in the event of tenacious conflicts. Quite frequently, medical teams initiate the decision process to limit or cease treatment, while patients or their families are often convinced that their best interest is to remain in opposition. The rapporteurs explain that “medicine finds itself trapped by continual rhetoric on medical progress”.
For Alliance VITA, it is agonizing to speak out on such cases of human suffering. Nonetheless, last January, Alliance VITA’s General Delegate, Tugdual Derville proposed his reflections on the current case. He carefully showed the difference between the case of Inès, and that of Vincent Lambert, who is in a pauci-relational state and does not require mechanical ventilation.
“The situation of the young Ines cannot be compared to that of Vincent Lambert.It is with respectful trepidation that we speak out on situations involving conflicting opinions within families, or between relatives and caregivers, which have been made public, either by media coverage or by legal accusations. Nevertheless, for Vincent Lambert’s case, we spoke out to emphasize that in our viewpoint, pursuing an enteral diet (once a gastric feeding tube has been inserted) and giving artificial hydration, both essential for the life of a pauci-relational or neuro-vegetative patient does not constitute unreasonable obstinacy, but only due care, which patients always deserve (to be kept warm, washed, dressed, fed, and hydrated). It should be noted that Vincent Lambert is not in an end-of-life situation, and that he breathes without mechanical ventilation. Regarding young Ines and the arduous conflict between her parents and the health care team, the case is completely different in our opinion since she can no longer breathe without mechanical ventilation.
After suffering a cardio respiratory attack at the end of June, as a secondary effect of her genetic disease, it is possible that at the beginning of summer, the recommendation to cut off the respirator, which was keeping her alive, was made hastily and without compassion.
Nonetheless, the role of medicine is not to keep seriously-ill and unconscious patients artificially alive for months on end, by mechanically forcing their respiratory function.
Furthermore, once the patient’s condition has been stabilized, and if his health permits, he will breathe spontaneously once the respirator is disconnected.
Therefore, in principle it is not an act of euthanasia, since the objective is not to cause death, but rather to stop treatment which has become unreasonably overzealous, and which is inappropriate to impose on the person to delay death. If the long-term respiratory maintenance virtually prevents a patient from dying, it can be qualified as abusive and overzealous care.
According to the law dated April 22, 2005 regarding rights for the sick and those at the end-of-life, care is qualified as “overzealous” when medical procedures “appear useless, disproportionate or when they have no effect except that of maintaining artificial life “.The difference between stopping a respirator versus stopping nutrition and/or hydration may seem to be a rather tenuous and fine line but, for us and our medical advisors, it is crucial, if the medical practice wants to remain on the cutting edge of appropriate treatment, that is “Neither disproportionate treatment, nor euthanasia”.]]>
When China’s government abolished their one-child law, it triggered unprecedented consequences on surrogacy, since the Chinese are now resorting to it, and some of them are even going abroad to circumvent the Chinese law.
The majority of couples who have a single child now wish to have a second child. However they are either too old or they want to select the sex and/or verify that there are no disabilities. However these practices are prohibited by Chinese law, as well as freezing oocytes or embryos.
Some couples circumvent the Chinese law and go to Southeast Asia. In China, nearly 80 million women are missing due to gender selective abortion, because Chinese families prefer to have a boy rather than a girl.
In 40 years, 330 million selective abortions could have been practiced. For demographic reasons, China now strongly prohibits this practice, while international and European organizations severely condemn this practice based on human rights’ regulations.
According to the Qianzhan State Research Institute, this so-called “reproductive tourism” registered 1.4 billion dollars of business last year and has already grown by 22% this year. The president of Singapore’s “Borderless Health Group” announced: Southeast Asia has a new industrial business chain“. Their future plans include developing sperm and egg banks in Thailand, Australia and the United States, primarily to target the Chinese.
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For the annual International Organ Donation Day, held on June 22, 2018, the French Biomedicine Agency launched an awareness campaign to promote donations. Their objective is to clarify the meaning of the presumed consent for organ donation stated in the 2016 Health Act in France, which has created uneasiness and apprehension that human bodies could be state controlled.
Organ donation has been addressed during the ongoing French National Bioethical Consultations. According to the French Biomedical Agency, there were 5,891 transplants in 2016, but nevertheless as of January 1st, 2017, there were still 14,500 patients on the waiting list for an organ transplant: an increase of 29.8% in the past 10 years in this country.
Although donations are to be encouraged in order to save lives, specific guidelines must be strictly respected. It is a major challenge to respect the people in such situation, especially the most vulnerable, and also to promote the practice of organ donation, which is based on mutual trust and confidence between those who are cared for and caregivers.
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On June 20, when Vincent Lambert’s three court-assigned doctors resigned, the Administrative Court in Chalons-en-Champagne, France, is now reconsidering whether or not to request a new expert for assessing the clinical recommendations for his case.
Appointed by court order on May 2, 2018, the 3 designated doctors were given one month to assess and report on Vincent Lambert’s clinical status. They handed in their resignation on June 14th, stating “they were not able to resist against criticism and attempts of manipulations”. They pointed out that “the three experts have no way of properly organizing this expert assessment, nor do they have the authority to control those who handle contempt, slander and lies”. In the end, the doctors suggested that the court appoint “a panel of experts, invested with undisputable authority”.
The June 20th hearing was intended to determine “the terms of the expert assessment”. The court president explained that the court is now faced with “two options: either appoint 3 new experts for an expert assessment, or conclude that the expertise was a failure, and, in such a case, “decide without further delay whether or not to stop treatment.
On one side of the family, Vincent Lambert’s parents’ lawyer Jean Paillot states “We’ve requested this expertise, and especially the truth on Vincent’s medical status” since “his state of awareness and responsiveness has changed”. Paillot also requested that the expertise be carried out by a specialized unit, outside of the hospital.
Those willing to stop treatment include other family members, and among them his wife and legal tutor, Rachel and his nephew François. Their lawyer Mr. Gérard Chemla, states that in any case “the expertise will not change the debate since the doctors have already gone as far as they can go and it is a case of unreasonable obstinacy”
As for now, the date for the hearing has not been set.]]>
On 12th June 2018, the French “General Inspectorate of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives 30 recommendations for a more homogeneous application of this law and for an improved consideration of the most vulnerable.
This report has been anxiously awaited ever since November 2017. At that time the French Health Minister initiated the request in order “to evaluate the law’s application, especially for training health professionals, implementing advance directives as well as naming the trusted individual for these directives, providing access to palliative care throughout the country, and establishing deep sedation in various health facilities, in nursing homes (EHPAD’s) or at home (“HAD”).
The report calls for “minor corrections in the existing law and regulations“, reminding that “keeping the regulations unchanged is essential to allow professionals, individuals facing the end of life, as well as their families and relatives, to have a good command of these regulations”. According to the rapporteurs, “The February 2, 2016 law, which was quickly adopted, gave an encouraging impetus for managing the end-of-life and developing palliative care”. With only 2 short years of field experience to evaluate how the law is being applied, this comprehensive report nonetheless shows the desire for improving the management of end-of-life situations, without denying the complexity of some situations.
The rapporteurs emphasize an urgent need for a more reliable system to input the data on end-of-life medical decisions. In particular, they mention the need for aspecific tracking, at national level, for decisions to restrict or discontinue a treatment, as well as for deep and continuous sedation until death “. In view of the lack of research concerning the end-of-life research, the report recommends that the topic of “Palliative and End-of-Life Care” be promoted in calls for national projects and in the programs run by major research organizations.
In view of these deficiencies, and of a problem of governance at the National Center for Palliative and End-of-Life Care, the report also recommends that this Center, created by the 2016 law, be audited “for better knowledge of palliative care, but also for monitoring and evaluating the public policies regarding the end-of-life “.
In recent years, advances have been made in palliative care training, but these efforts need to be improved to develop palliative care and to reduce regional inequalities. In the following analyses and studies carried out in the past few months, the report underlines the importance of developing palliative care in nursing homes (“EPHAD’s”).
Advance directives and person of trust
It appears that people are more at ease in designating a person of confidence, than writing their advance directives. Although it is true that the collection of advance directives can be “improved” and that there is still a little number of directives, yet the rapporteurs mention that they are not mandatory. “Even if there are many different forms, of unequal quality, their proliferation should still be encouraged”. Some patients are in favor of simple forms, while others are reassured by exhaustive forms.
Mainly handwritten on plain paper, the legal binding aspect for the advance directives is in fact compromised by a vague wording. However, “the majority of health professionals (doctors, caregivers, hospital staff), all agree that there is more open and improved communication with patients and their loved ones on the end-of-life. They ascertain that the February 2, 2016 law helped curtail taboos, allowing discussions for speaking about suffering, support, comfort, sedation, and adapting to changing situations over time.“
How to define “Unreasonable Therapeutic Obstinacy »
The feedback from field situations emphasizes that identifying a case as “unreasonable therapeutic obstinacy” is remarkably complex. The term is defined as “the useless or disproportionate nature of the treatments in question, but giving leeway to interpretation or uncertainties depending on the circumstances.” As the authors point out, it is challenging to “adapt to each situation and to foster the flow of communication in order to facilitate consensus“. In most cases, the medical team usually initiates the issue of restricting or stopping treatment, however in some cases the patients, or their families, persist in their opposition, convinced of doing the right thing: “and medicine finds itself ensnared by its own promise of promoting medical progress.”
Recent cases involving the young Marwa and Ines but also Vincent Lambert are notable examples of these tense conflicts. The recent report recommends creating a telephone access for professionals confronted with such cases, to be able to discuss with a qualified external consultant, a professional mediator or an expert in ethical issues.
In particular, acknowledging that artificial nutrition and hydration is a treatment that can be stopped is “a delicate issue which is problematicto execute “. This is especially relevant for the most vulnerable individuals, such as patients with Alzheimer disease, or those in a pauci-relational condition. As the French National Union of Cranial Injuries (“UNAFTC”) has pointed out, artificial nutrition and hydration “constitutean integral part of the therapeutic and life plan for these patients. Thus it cannot be considered as unreasonable obstinacy, unless otherwise expressed by the patient’s advance directives or witnessed by the designated person of trust, or in the absence of the family or relatives, or in the event of complications.”
Deep and continuous sedation until death
According to the hospital centers consulted, these requests are rare. A quantitative survey was launched by the National Center for Palliative and End-of-Life Care, which was challenged by the SFAP (French Society for Accompaniment and Palliative Care). More specific data should be available by the end of the year.
On March 15, 2018, the High Authority of Health (“HAS”) clarified the grey zones for implementing “deep and continuous sedation until death” by publishing recommendations and standard operating procedures. The authors were cautious to differentiate this exceptional type of sedation, from euthanasia, whose objective is to cause death. According to some teams interviewed, “this new right has fostered patient communication, sometimes leading to cancelling requests for euthanasia“. Several overall difficulties linger: “healthcare teams are expected to discern essential concepts such as refractory suffering, unbearable suffering, and life-threatening conditions in the short term, while also appropriately handling the current criteria for evaluation …»
As a conclusion, the rapporteurs insist that “each situation dealing with the end-of-life must always be considered as profoundly unique, painful and complex.»]]>
On June 6, 2018, the Swiss Academy of Medical Sciences (“ASSM”), updated and revised the 2004 guidelines for their “Position on the End-of-Life and Death“. One of the directives given by this organization, responsible for establishing ethical regulations for Swiss health professionals is intended to ease medical stipulations for assisted suicide.
Previously, Swiss doctors could only prescribe lethal substances for patients facing imminent death. With the new “end-of-life” stipulations, doctors will be able to propose assisted suicide to their patients enduring “unbearable suffering due to symptoms from their disease and / or functional limitations”. This new criterion will comes in replacement of the “end of life” criterion.
With more than 40,000 members and federating over 70 medical organizations, the Federation of Swiss Doctors (“FMH”), is opposed to the new guidelines. Their president, Jürg Schlup, declared: “this new guideline is vague and could lead to misinterpretations within the Deontology Commission. This is particularly serious for such an irreversible decision.” This new version for the code of ethics may not be recommended even though the association is determined to carefully examine the situation.
Samia Hurst, as member of the sub-commission who drafted these end-of-life guidelines, admits that “unbearable suffering” is subjective. “After taking the patient’s case history into account and examining the patient on numerous occasions, the doctor must determine if the suffering is indeed unbearable. Regardless of his conclusions, the doctor still has the right and freedom to refuse to provide suicide assistance. He remains free to do so. It cannot be imposed upon him. “
The Bioethics Committee of the Swiss Bishops’ Conference pointed out a very serious switch in these new guidelines because they are in absolute contradiction with current medical ethics and even alter the purpose of medicine itself. Every single caregiver would be in a position to decide whether assisted suicide “is medically indicatedor not“. Until now, the guidelines unequivocally stated that assisted suicide was not defined as a medical activity since “it is contradictory to medical objectives“.
In the past few years, the number of assisted suicides has risen sharply in Switzerland. The Swiss Health Observatory notes that “Compared to other countries, and to other health problems, in Switzerland, death by suicide is an often underestimated public health problem. In Europe Switzerland has an above-average suicide rate.”Recall: Under certain conditions, assisted suicide is allowed in Switzerland, under Penal Code, Article 115, which prohibits encouraging or assisting suicide for “selfish reasons“. Euthanasia remains unlawful.
The Confederation has recognized the ASSM, i.e. the Swiss Academy of Medical Sciences, as “an institute for promoting research”. It is namely in of the task of examining ethical issues. The Central Ethics Commission of the ASSM defines medico-ethical guidelines which are usually added to the Swiss Federation of Medical Practitioners’ Code of Ethics.]]>
Throughout France today, Alliance VITA members staged a symbolic event to help citizens realize the risks that the “ART for all” project entail for children’s rights.
Alliance VITA’s national awareness campaign was launched simultaneously in 60 French cities at 1:00 pm on Tuesday, June 12, 2018, to warn against impetuously plunging into the reproductive business.
For the past 6 months, the French National Bioethics Consultations have been focused on “ART for all” or ” ART without a father”. Since this technique ignores children’s rights, VITA’s awareness campaign is resolved to focus on children’s rights, which are at risk.
For the event a large barcode is imprinted on a baby, sitting alone in an adult’s chair, surrounded by anonymous men and women lying on the ground, wearing white masks, and dressed in black mourning attire. The signs say: “ART: Goodbye Daddy”; “ART: Goodbye Mom”, to illustrate the unfair and immediate effect the government’s project would inflict on children.
The headline on the banner proclaims: “No ART business”, and in the presence of supporters wearing Alliance VITA T-shirts and carrying signs, the spokesman gave a speech to launch the awareness campaign.
If ART is legalized in France for reasons other than medically-diagnosed infertility, it would allow single women and female couples access to sperm donations, and thus children intentionally deprived of their father could be conceived. And there are already so many children who are suffering from their father’s absence, and so many women who are struggling to raise their children alone!
If the law is passed to allow “ART for all”, on non-discrimination grounds, male couples would claim access to surrogacy to obtain a child, which would deliberately deprive children from having a mother.
If it is admitted that there is such a thing as a right to have a child, then human procreation would be changed into a market, whether private or state controlled, which would regard men and women as producers of raw materials – oocytes, sperm, uterus – in order to conceive a child on request, and even designer babies.
The shift from “children’s rights” to “the right to a child”, would change children into products which can be bought and would take us even closer to eugenics in order to check, to sort, to validate, to eliminate this “product”, like any other products.
The International Convention on the Rights of the Child recognizes the right of the child to know and be cared for by his parents in as far as possible. As a country responsible for defending human rights, France must encourage the rest of the international community to take a stand against Anglo-Saxon utilitarianism, which tends to consider human beings and their body products as commercial items.
Alliance VITA insists that if ART is legally permitted for those who do not fill the medical infertility criterion, a red boundary line would be violated. This calls for mobilizing society on a widespread basis to protect children and the best interest of the child.
In response to the alarming reports and various social movements’ reclamations on the critical situation in French nursing homes (“EHPAD’s), Agnès Buzyn the Health and Solidarity Minister presented the Government’s plan for the elderly, following the efforts undertaken by the French National Solidarity Fund for Autonomy (“CNSA”) and the Assembly of French Departments on May 30.
Last year, there were 1.5 million inhabitants over 85 years old in France, but by 2050 they will number up to 4.8 million. Based on these figures, the Health Minister has declared some emergency measures which are intended to help improve the quality of life and the autonomy for the elderly.
The government’s priority will mainly focus on prevention, both at home and in institutions. In 2018, 15 million € will be allocated, followed by 30 million € starting in 2019, for prevention policies in nursing homes which the regional health agencies will oversee. Opinion surveys in the nursing homes to verify the appropriate measures will be carried out by the High Authority for Health (“HAS”). In addition, strategic measures will be implemented to address the ever-increasing needs for medical care.
360 million € will be attributed to the French nursing homes “EPHAD’s” from 2019 to 2021 to recruit additional nursing staff.
36 million € will be budgeted for hiring night shift nurses, on a standard basis by 2020, to reduce cases of preventable admissions to the ER, and ensure appropriate night care.
40 million € will be allocated from 2018-2022, in order to install widespread and standardized access to telemedicine for the “EHPAD’s”.
15 million € will be financed by health insurance plans, starting in 2019, to add 1,000 temporary beds to the existing “EHPAD’s” for patients being discharged from hospital in order to facilitate their return home.
A minimum of 100 million € in the annual budget, starting in 2019 will be given to help renovate the “EHPAD’s”
16 million € will be allocated by 2020 to reinforce the number and the mobility of geriatric personnel.
Other strategies are being developed to encourage home care by adapting living spaces, and proposing support for home care-givers, but also measures for improving work conditions for professionals in nursing homes.
Despite the fact that the government has promised a substantial financial budget, various professionals in health care for the ageing maintain that these strategies only partially respond to the challenge of caring for the ageing population. The French Professional Federation of Directors of Health Care Establishments for the Ageing (“FNADEPA”) laments the lack of commitment to reinforcing human resources, encouraging the fidelity of professional heath caregivers, and tackling the need for better professional recognition. One of the most critical issues involves how to increase the number of caregivers compared to the number of patients. Yet, the financial budget announced will not attain the recommended ratio of 60 carers per 100 patients (as recommended by the MPs Monique Iborra and Caroline Fiat’s report for the “EHPAD” crisis situation (March 2018).
After having announced these initial measures, the Health and Solidarity Minister now intends to open a national discussion to obtain a larger input from health professionals and French citizens, and reflect on the situation: how can society respond to aging and funding care for the elderly who lose their autonomy. The stated objective is to formulate proposals before 2019. To avert discussions uniquely based on financial constraints, the minister urges a reflection based on the following questions:
How do we define our future priorities for the elderly, confronted with the loss of autonomy, and based on accessible goods and services?
How can we ensure contributions from all spheres of society to sustain funding, based on solidarity, when facing the loss of autonomy?
How can national and territorial government policies be modified to protect the ageing population and their loss of autonomy?
In the past few months, Alliance VITA has been invited to speak before the French National Consultative Ethics Committee (NCEC), the National Medical Academy, the Economic, Social and Environmental Council, and the Council of State. Now, on June 5th, Alliance VITA takes note of the report issued for the French National Bioethics Consultations.
Among the topics discussed, a lot of attention has been focused on allowing single women or female couples access to ART. Nonetheless, Alliance VITA contends that infertility should be treated as a national public health issue, both for infertility prevention and for research, which could thereby trigger genuine therapeutic treatments.
But if women can access to ART for other reasons than for medical infertility, quite the reverse would happen. Actually, this would be an unprecedented deviation towards a human reproduction market, whether private or state controlled. In this reproductive business, men and women are regarded as laborers and producers of raw materials – oocytes, sperm, uterus – in order to produce infants, or even customized babies.
Alliance VITA cannot but acknowledge the convictions expressed throughout the participatory process: a high number of citizens have argued in favor of preserving reproduction based on alterity. Only a small minority have requested modifying the bioethics law on this point.
The point has now arrived when the politicians must voice their opinion. French President, Macron has stated his commitment for a peaceful discussion and it would be difficult to understand the politicians if they do not take into account the results of the National Bioethics Consultations.
As technology continues to progress, Alliance VITA voices its global vision of reproduction and alerts against a human reproductive market composed of eugenic, unjust, and even totalitarian aspects which must be taken seriously.
In the coming days, Alliance VITA will launch a number of actions to inform the public and get people involved on these major issues, which affect our humanity and our future. France, as a country concerned about human dignity and opposed to the commodification of the human body and of its products, has a particular role to play in this field.
On Tuesday May 29, 2018, Portugal’s parliament rejected a bill to make euthanasia and assisted suicide legal.
MP’s voted to reject all 4 bills presented, including one from the Socialist Party who has the majority vote. Other bills were presented by the Greens, the far-left group (Left-Bloc) and the Party for People-Animals-Nature.
On the right, the conservative Social Democrat Party (center-right) did not give any voting instructions, leaving the MP’s to vote according to their conscience, while the right-wing minority party stated their opposition to all 4 draft bills.
The Communist Party declared its’ opposition to any form of legal euthanasia or assisted suicide. Their manifesto stated that social progress for society does not consist in renouncing one’s responsibilities by causing death in an expeditious manner, but rather by “providing the conditions to live in dignity, deploying all the means and possibilities for social order, science and technology to overcome suffering and sickness, and by ensuring social inclusion and support for the family. “
A recent survey, sponsored by the forum “Think and Debate” (Pensar & Debater), revealed that the vast majority of respondents (89%) prefer investing in palliative care rather than legalizing euthanasia.]]>
In his letter dated December 6, 2017, the French Prime Minister requested that the State Council carry out a study on “the legal context prior to reexamining the bioethics law”.
Following the same procedure that was used to write the bioethics laws in 1994, 2004 and 2011, the French government wants the Council of State to take part and give their input during the collective reflection which will be held to identify legal issues prior to potential modifications in the existing bioethics laws.
Alliance VITA’s representatives Tugdual Derville, Caroline Roux and Blanche Streb insisted on the importance of bioethical guidelines which respect the life and dignity of society’s most vulnerable individuals. When questioned about the progress of the National Bioethical Consultations, they pointed out the strong citizen implication on the child’s right to have protective reference points, and they think it is inconceivable to ignore this conviction when the new bill is drafted.
Based on the experience of their listening services, SOS Baby and SOS End-of-Life, they pleaded in favor of a genuine evaluation of the previous laws and their impact on people’s life, instead of a head-long rush forward for more technological progress.
This applies in particular to the infertility issues (causes, prevention and real therapy). Another important issue is that of diagnosing and announcing a disability in an unprejudiced manner, to enable society to accept disabled individuals. The major risk of the next bioethics law which claims “ART for all” or surrogacy, would be to edge even closer to the globalized procreation marketplace, and this would call into question the principle of non-commodification of the human body. Alliance VITA called for an ethical conscience as an answer to eugenics, to researches which destroy human embryos, and to the modifications of the genome of embryos. The issue of the end-of-life was also discussed. Although Alliance VITA is still watchful for the risks of a euthanasia that does not tell its name, they endorsed the recent recommendations given by the High Health Authority which give guidelines for practicing sedation.
The Council of State’s report is scheduled to be released by the end of June 2018. Alliance VITA was previously heard by the National Ethics Consultation Committee on March 8th for the French National Bioethics Consultations, by the Academy of Medicine in January 2018 on the medical aspects of ART excluding ART for medically diagnosed infertility, by the Economic and Social Council in 2017 and by the Social Affairs Committee of the National Assembly on the End-of-life issue in April 2018.]]>
Researchers at the French National Institute of Health and Medical Research (“INSERM”) and Lille University have recently discovered the cause of Polycystic Ovarian Syndrome or “PCOS” which affects almost 1 in 10 women of childbearing age and is the main cause of female infertility worldwide.
Animal research studies on mice have proven to be very promising. A recent study published in Nature Medicine demonstrated a correspondence between PCOS and prenatal exposure in the uterus to a growth factor known as anti-Müllerian hormone (AMH). This hormone is responsible for a hormonal imbalance in the uterus and thus in female fetuses.
According to scientists, the anti-Mullerian hormone seems to cause over-stimulation of a set of cells in the brain that are directly involved in regulating testosterone levels, thus giving increased testosterone levels in the blood and the uterus. Researchers discovered that pregnant mice treated with AMH have female offspring that later develop the characteristic PCOS symptoms in adulthood. The female fetus has high testosterone levels, which disrupt the ovarian follicles growth mechanism and cause ovulation dysfunction, thus resulting in infertility.
Until now, no preventive or curative treatment for women with PCOS has been available, but researchers may have found a way of treating the disorder. A molecule used for in vitro fertilization (IVF), known as cetrorelix, which regulates the function of the specific brain cells has been successfully used to treat mice suffering from PCOS. A clinical trial could soon be implemented to evaluate its effect on women with this disorder.]]>
On May 18, 2018 a survey on palliative care and euthanasia was published on the Portuguese blog “Think and Debate” (Pensar & Debater) revealing that a large majority of the population prefers investing in palliative care, rather than legalizing euthanasia.
The survey was recently conducted just when several legislative proposals are being tabled by left-wing parties to legalize euthanasia. Those proposals will be debated on May 29th.
According to the Portuguese Institute of Marketing Research who conducted the survey, the results reveal that only a minority is in favor of euthanasia (7%), while 89% of the population stated a preference for investing in palliative care and support in the event of serious illness.
The main fears expressed for the end-of-life issue are the fear of suffering (72% of those surveyed), the fear of being a burden for the family and those around them (61%), while 35% fear loneliness.
Beyond these fears, this survey clarified the fact that current legal provisions are not well understood. For example, 75% of the citizens were not aware that Portuguese law protects against unreasonable treatment, and also allows the patient the right to refuse care. This misunderstanding explains why some citizens are in favor of euthanasia.
Nonetheless, 67% of the population point out the potential abuses caused by a law in favor of euthanasia. The majority of the Portuguese denounce possible pressure on the elderly or vulnerable patients (67%), abusive euthanasia without the patient’s consent (57%) or for financial reasons (53%).]]>
The founder of the Swiss non-profit association for assisted suicide, Dignitas, 85-year old lawyer Ludwig Minelli, has been accused of profiteering in 3 cases of assisted suicide.
On May 18, Minelli stood accused in the Uster District Court (Zurich) of allegedly having accepted a 100,000 Swiss franc donation from an 80-year-old German woman in 2003, although his assistance only cost a couple thousand francs. In the second case, in 2010 a mother and her daughter were charged double the usual costs (approximately 10,000 Swiss francs) according to the prosecution. The day before the hearing, Dignitas had celebrated the 20th anniversary of its’ founding.
Under Swiss Law, providing assisted suicide services is not illegal as long as assistance is not tendered for “self-serving motives” such as financial gain: doing so is punishable by up to 5 years in prison. This is an automatically prosecuted offense (“ex officio”). In his closing arguments, the prosecutor stated that Ludwig A. Minelli uses “unauthorized commercial tactics (…). High fees are charged which bear no relation to actual cost.” He also argued that Dignitas has a capital of 1.8 million Swiss francs compared to Exit, the largest assisted suicide organization in Switzerland whose membership outnumbers Dignitas, which only has a capital of 200,000 Swiss francs.
Prosecutors are calling for a fine of 7,500 Swiss francs, plus a suspended financial penalty of around 65,000 (360 days of CHF 180/day).
The founder of Dignitas receives 150,000 Swiss francs annually (about 129,400 €), which he considers appropriate. “All work deserves payment,” he says in justification of his elevated salary.
In November 2017, the court had returned the indictment to the public prosecutor’s office for amendments, to complete missing data in the file. The judgment will be rendered at a later date. This trial, the first of its kind, could provide an opportunity to clarify basic questions about assisted suicide and the allowable charges for costs.
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About Dignitas:Unlike the Exit association which is only for Swiss citizens, foreigners may call upon Dignitas’ services. But to benefit from their assisted suicide service, one must first pay membership fees to join the association. Dignitas is also part of the World Federation of Associations for the Right to Die, and so is the Association for the Right to Die with Dignity (ADMD), the leading French association for euthanasia and assisted suicide.]]>
In a notice published on May 17, 2018, the French National Consultative Ethics Committee (NCEC) pointed out the ethical issues related to aging, especially the risk of being socially isolated or excluded.
The authors reveal a collective denial towards old people who are no longer self-sufficient, which can result in mistreatment, social exclusion and even ghettoization.
The text recalls that the number of non-autonomous elderly people is over one million in France in 2010, and is estimated to reach 1.5 million in 2030. The average age of people living in “EHPADs” (French nursing homes) is currently 85 years old. In many cases these individuals are “left on their own” and “socially excluded”. For those age 75 and over, the suicide rate is twice the national average: 30 per 100,000 compared to 14.9.
The NCEC alerts on the way seniors are treated by society. They also criticize the media, which in their opinion, distort or misinform when they do not report on “the real life of vulnerable and frail individuals”.
Among the recommendations made by the NCEC some are similar to those presented in recent parliamentary reports.
More systematic support to family and caregivers in charge of ageing individuals, a prerequisite condition for at-home care.
Developing new forms of volunteering to create an interface of solidarity between those who are in good health and those suffering from illness or disability, and their loved ones.
developing intergenerational dynamics between healthy and sick or disabled, between the young and the elderly, between active employees and unemployed or retired people…
Following the vote on the Act on Adapting Society to Ageing Population which came into effect in January 2016, the government appointed, last February, a commission to prevent mistreatment of the elderly and disabled persons.]]>
On May 13th, the MPs in Finland rejected a draft bill to legalize euthanasia by a vote of 129 to 60.
This bill had been submitted by a member of the National Assembly following a citizens’ initiative calling for euthanasia to be legalized. The Parliament preferred to support the Social Affairs and Health Commission’s recommendation to create a working group to improve palliative care, and thus voted against legalizing euthanasia.
In Europe, euthanasia has only been legalized in a small minority of countries: the Netherlands, Belgium and Luxembourg.]]>
On May 25 a referendum on abortion will be held in Ireland.
Abortion has always been illegal in Ireland in both Northern Ireland, (part of the UK) and the independent state of Southern Ireland. Its prohibition was added to the Constitution in 1983, with the 8th Amendment, which aims to protect “the right to life of the unborn child“. Any woman who undergoes an abortion, as well as any individual who helps her obtain access to abortion faces a potential penalty of 14 years in prison. Since 2013, abortion is only allowed when the mother’s life is at risk.
This is the 6th referendum in 35 years on this subject. This time the referendum deals with the repeal of Article 40.3.3, known as the 8th Amendment of the Constitution. The current law does not explicitly prohibit abortion: it provides an equal right to life for the unborn child and the mother.
For the past two weeks, the debate has been raging in Ireland, with the pros and cons confronting each other against a backdrop of strong international pressure. If the majority votes in favor of the referendum, the government intends to draft a law to allow abortion in the first twelve weeks of pregnancy and beyond if the mother’s life is at risk, or if the fetus is at risk of dying before birth or shortly after.
The obvious risk is that political convictions will predominate without ever allowing a genuine debate. Moreover, the crucial issue is still being ignored: that of preventing abortion and supporting women faced with unexpected pregnancies.]]>
In mid-April, the Institute of Infertility in Valencia, Spain (IVI), a private group of specialized clinics in reproductive medicine, launched the “IVI Baby” program, which guarantees a refund for women and couples when their treatment protocol is unsuccessful and does not result in having a child.
The stated focus is to give clients peace of mind and guarantee the birth of a baby after following the assisted reproductive technique (ART) program. “With IVI Baby, you’ll bring your baby home in a maximum of 24 months,” claims their website. Nevertheless, before being able to follow the treatment program, various criteria must be met, related to the patient’s age, body mass index (BMI), past health history…
According to Dr. Antonio Requena, General Medical Director of IVI: “the quality of the medical protocols, our advanced laboratories with state-of-the-art technology, and highly qualified professionals together enable this innovative plan to be offered with confidence and guarantee the birth of a baby”.
The IVI group is at the forefront in the field of ART, with over 70 clinics in 13 countries specialized in reproductive medicine, and claims 160,000 children have been born in the past 27 years via IVI.
Caroline Roux, Alliance VITA’s Assistant General Delegate and Coordinator of Listening Services:“This type of company has a business based on reproduction. Their so-called ‘innovative’ offer is the equivalent of ‘100 % satisfied or 100% financial refund’. However this is everything but an improvement: the marketing vocabulary in the reproductive business consider babies as objects to be acquired. When Alliance VITA sounds the alert on the risks of dangerous transgression in the reproductive market, they are based on tangible facts. Until today, France has resisted. We are fighting to ensure that the current bioethics law under revision guarantee the non-commodification of reproduction. A genuine innovation would be a research policy to understand the causes of infertility and to propose treatments to restore fertility in order to give couples reproductive autonomy.” _____________________
Further information: Press Conference on the Reproductive Marketplace. ]]>
On 3 May 2018, the Administrative Court of Châlons-en-Champagne, France announced the appointment of 3 medical expertsto examine Vincent Lambert’s clinical condition.
Following the collegial decision on April 9, Vincent Lambert’s attending physician at the Reims Medical Center, Dr Sanchez, authorized “stopping treatment”, which implied that his nutrition and hydration would be ended within the succeeding 10 day time-frame, the Administrative Court of Châlons-en-Champagne ordered an expert report, before rendering a judgment on the referral filed by the parents.
The President of the Administrative Court named medical experts who are specialists in neurology, physical and rehabilitative medicine. They will have to determine whether Vincent’s health condition has evolved since the last assessment performed by order of State Council in 2014. “The decision concerning the appointment of the panel of experts has been made” and “the experts must submit their report within a month,” said the Administrative Court in Chalons-en-Champagne.
After reviewing the report of the College of Physicians, a new court hearing will have to either confirm or overturn the Medical Center’s decision to stop treatment.
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Alliance VITA’s Council began its electoral process on March 17-18, and a final vote held on Sunday April 29 re-elected François-Xavier Pérès as Alliance VITA’s President.
He will therefore begin a second 4-year term, which will coincide with the end of French President Macron’s ongoing 5-year term. François-Xavier Pérès was elected president of VITA for the first time in 2014.
The VITA Council has approximately 100 members; including departmental delegates, regional managers and VITA experts, plus members of the association’s permanent staff, with Tugdual Derville serving as the General Delegate.
François-Xavier Pérès, 37 years old, is married, and the couple has 3 children. He joined the VITA team in 2010 in Montauban (department 82). In 2012, when he was transferred to the region of Loire-Atlantique, for his job in human resources risk management, he also accepted the responsibility of becoming VITA’s regional delegate.
He ended Alliance VITA’s 2018 Annual Bioethics Conferences, where 7,300 participants attended via videoconferences on 140 sites, with these words: “There is no good reason not to make a commitment in favor of life and human dignity. This commitment is not limited to political parties, ethical committees or caregivers. We are all concerned, where we live and work … All around us: it is an issue of justice and humanity. “
The “ESEC” (Economic, Social and Environmental Council) has recently requested for the French government to launch a generalized public citizens’ debateon ageing and greater dependency in their draft opinion submitted on April 24, to the Health Minister, Agnès Buzyn.
The ESEC addressed the issue of advanced aging and greater dependency, in view of the on-going personnel crisis in the French nursing homes (“EPHADs”). At their plenary session held on April 24th they voted an opinion statement entitled “Aging with Dignity“, which includes 15 recommendations. At a time when the “EHPAD” personnel are experiencing enormous distress due to staff shortages and poor working conditions, the ESEC intends to adopt the flagship recommendations of the parliamentary mission to double the number of nurses and nursing aides within the next 4 years.
The report underlines the fact that the current services and accommodation for the elderly “are inadequate for their needs and expectations”. Among the 15 recommendations in their report, the ESEC concurred that “as soon as possible, a wide public discussion should be held, to address sources of funding for collectively managing the loss of autonomy”. The ESEC also recommends reuniting everyone involved in this field to “ascertain the main points for long-term sustainable financing for home care services”. They suggest carrying out studies to better identify “any social and territorial disparities in the subsidiary programs” granted by different regions, in order to better equilibrate the Personalized Autonomy Allowance (PAA) levels.
Finally, the report underlines the importance of preventing the loss of autonomy, “throughout life” and “especially at work” in order to “limit or delay the effects of aging”. The ESEC also recommends “expeditiously lift” the obstacles for the administrative procedures for time-off periods developed for caregivers. The report also stresses the necessity of maintaining social contact and fighting against solitude and loneliness.
All these recommendations are a welcome contribution to the ongoing broad-based deliberations for the past few months in France, concerning how to best manage healthcare for the ageing population. Nevertheless, the ESEC’s work is diminished by a recent opinion published on the end-of-life, a highly controversial statement which recommends legalizing euthanasia, by disguising it as healthcare.
As emphasized by Tugdual Derville, Alliance VITA’s general delegate *:“Today some elderly people are being marginalized from society; how tempting it could be for us to deem that their lives are not worth living. When their health begins sliding downhill, how tempting it could be to employ the means to finally “be finished” with this life that is burdensome! This is an enormous risk! At these most difficult moments, the knowledge that we won’t resort to an expeditious process of euthanasia, can incite us to be much more inventive and show more solidarity.”
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* Quote from the Round Table discussion on End-of-Life organized by the Social Affairs Committee of the French National Assembly on April 18, 2018.]]>
Life-support treatment was withdrawn by legal order in the UK in the evening of April 23, 2018 for 23 month-old toddler, Alfie Evans. His parents have filed an urgent appeal for a transfer to Rome where the Italian authorities have accepted to care for him.
Born on May 9, 2016 Alfie has a degenerative neurological condition, which is difficult to diagnose. Since being admitted to the Alder Hay Children’s Hospital in Liverpool, he has been in a pauci-relational state on a mechanical respirator. The toddler’s young parents have filed numerous lawsuits in the past few months, to contest the hospital’s requests for withdrawing Alfie’s life-support treatment. They have already lost a series of appeals in the High Court, the Court of Appeal, and the London Supreme Court who all ruled in favor of the Liverpool Hospital considering that the latter “must be free to act in the manner which has been established to be in Alfie’s best interest.” The parents’ appeal to the European Court of Human Rights (ECHR) was also rejected.
Faced with the impending ruling from the British courts to withdraw the tot’s respiratory assistance, several prominent individuals have recently become involved: including Pope Francis and the President of the European Parliament Antonio Tajani. The authorities in Italy are ready to offer Italian citizenship to Alfie so care could be continued in a hospital in Rome.
Nine hours after stopping his respirator, the little boy continued to breathe spontaneously on his own; in the morning he was hydrated and received oxygen. The parents’ lawyer filed a new emergency appeal on Tuesday, April 24th, requesting his transfer to Italy. During the hearing the Liverpool Hospital doctors voiced their circumspection for the child’s short-term medical condition, in the event of a theoretical transfer. Then in the evening, the British court ruled against the transfer to Italy but considered the possibility that the parents could take Alfie home.
A new hearing is scheduled for Wednesday afternoon, April 25th.
This case is reminiscent of another heart-breaking case, that of the little Charlie Gard, who died on July 21, 2017. Charlie’s parents had protested against stropping treatment, but after final medical examinations, accepted that their baby’s respiratory assistance be withdrawn.]]>
To participate in this year’s National Consultations on Bioethics in France, Alliance VITA has requested for people to share their testimonies when facing certain trials in life such as: infertility, disability, illness, bereavement…
In response to VITA’s request at the end of January, these testimonies were published on their website to contribute to the widespread citizen involvement for the National Consultations on Bioethics taking place this year in France.
Just a few days before this National Bioethical Consultation website will be closed to public comments, Alliance VITA has published an online, illustrated collection of the testimonials which they have received hereto date, that will be updated in the coming days.
Each one of these personal stories reminds us, that behind all the topics being discussed, are genuine men and women for whom technology and legislative measures do not respond to their distress. Different subjects are addressed varying from the difficulty conceiving a child, to accompanying someone at the difficult end-of-life period, to hearing the announcement of a handicap,
The reality is much more complex, painful, and necessitates a retrospective journey, that is to say time. And these testimonies invite us all to leap forward in a burst of human solidarity.
“I was pregnant with my first baby who was diagnosed with a serious heart malformation at 6 months … »
Twenty years ago, I was expecting my first child. A serious cardiac malformation was diagnosed at my 6th month of pregnancy. Only two outcomes seemed available: either ending pregnancy for medical reasons ortherapeutic obstinancy after my baby’s birth. The pressure I felt from the medical and social services was very strong, in an atmosphere of panic and emergency. My son died at 6 months of pregnancy, from a ‘medically performed abortive procedure”. I felt immeasurable guilt and pain. Even today, I still regret this act. It would have been so much healthier for me if my son was born and died a natural death, where he could have received palliative care if necessary.
Juliette
« If something serious happens to me, I want you to donate everything …»
I am a mother of 3 children: Camille age 20, Pierre age 26, and Alexis, who was 23 years old. Alexis died on May 9, 2015 following an accident when he was chopping wood. Alexis was in a state of brain death. Previously in the winter of 2015, he expressed his desire to be an organ donator following a broadcast the family watched together. His words “if something happens to me, donate everything” have allowed our family to be more serene about his decision for donating. Alexis gave his organs to 6 different people. Afterwards we founded the association “Alexis, an energy for life” (“Al.é.lavie”) in tribute to him and to allow families of organ donors to be heard. Many associations have been founded for people receiving transplants in France, but very few if any for living donors or families of deceased donors. In March 2017, we set up a discussion group in the French region of the Rhône-Alpes, headed by professionals who support relatives of organ donors. We also try to that for this sensitive subject of organ donation every citizen receives better information which is clearly explained in the context of our bioethical laws. In my opinion, the ethical rules for this field must be conceived in collaboration with the medical, associative, political and civil members of society. To contribute, we hope to help families of organ donors express their feelings and opinions.
Catherine
« I can testify to the beauty of the last months of life, which certainly comprise physical and moral suffering, but so much more… »
As a psychologist specialized in palliative care in patients’ homes, I can that I have witnessed and experienced the beauty of individuals’ last months of life, which are both physically and morally painful, but also more fulfilling than imagined! How many families try to exceed what is expected of them? How many families undertake an incredible journey filled with dialogue, introspection, and thinking of others? How many families have gone from “I give up, I can’t continue anymore, let’s finish off with this” to “happily we had these months together; we were able to talk to each other, to address previously topics which had previously been ‘taboo’…And still others: “I didn’t think I was capable of accomplishing that, I feel proud to have accompanied my family member until the end”…Ombeline
« After 2 to 3 years together, we still were awaiting the birth of our 1st child. »
After 2 or 3 years of married life, we were still were unable to conceive a child, so we investigated causes of infertility. After medical testing without any positive prospects, the doctors proposed an IVF inherent with all the questions and issues related to conserving embryos and the artificial reproduction technique (ART) disassociated from any form of physical and emotional act of love. We were uncomfortable with this proposition which we finally turned down. The doctors were ambivalent about our decision. We then turned to adoption procedures, to especially receive a living child in our home, compared to fabricating a child at any price. Happily, medical techniques continue to evolve! But we must consider that their role is to repair, or to replace cells of pathological tissues, but never to circumvent and modify an organ or a human body, to preserve the natural human condition without trying to liberate its’ state from the respect of its human contingencies.
Carine
« According to his wishes, he died at home with palliative care. »
On September 2nd, my husband expired from cancer contracted 11 years ago when he was 49 years old. He died according to his desires: at home with palliative care. I would like to testify to render homage to the accompaniment by the nurse, the doctor, the healthcare team and my mother which were exceptional for both of them. The end-of-life is very precious in both directions. It’s too important to be deprived of signification, cannot be esteemed to be meaningless, nor ultra-medicalized, abridged artificially, nor trivialized…
Dominique
« At birth, the doctors said that I wouldn’t live…»
I am 56 years old and I was born with a spina bifida. At birth, the doctors said I wouldn’t survive. I was in an incubator for 2 ½ months. Already at a young age, I had to fight for life. The doctors then said that I would have VERY SEVERE disabilities and that my parents should not become attached emotionally. At 2 ½ years, I started reeducation and finally took my first steps at 6 ½ years old. I live independently despite my great walking difficulties and my complete incontinence (I requested an artificial bladder at age 10). I have worked non-stop for almost 32 years. I LOVE Life and I defend it. I deplore and scream that no one speaks out for others No one has the right to say that a child won’t be happy in life just because he is disabled. An autonomous individual cannot imagine how it is to be disabled. Today, most children who are diagnosed with spina bifida are aborted and are never born. I have the right to say that I survived. I agree with medical research to improve the lives of people with disabilities, for cures, to heal them.
Claire
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On April 18, 2018, Alliance VITA held a presentation and dedication ceremony in honor of their Director of Training and Research, Blanche Streb, for her new book entitled: “Customised Babies – Survival of the Fittest”1 (published by ARTEGE editions).
Interview
What motivated you to write this book?
Because not only in France, but elsewhere, we are in a state of ethical crisis. The government is suggesting that surrogacy without father may be authorized. Even the fact of speaking of such a drastic permutation show that we are on the verge of a commonly accepted right to have a child. For any situation whatsoever, even in case unrelated to infertility. The right to have a child is the first step towards ordering babies from an “à la cart” menu. We must be on the alert when we see how the reproductive marketplace and pre-selection process is already expanding in other countries: the US, Belgium, Spain, Cyprus, Ukraine etc. Is this really what we want for our country…to have the right to place an order for a child?
Debates concerning surrogacy without a father have clearly shown that French people disapprove it. Society is “not ready”. Fortunately, the priority still prevails in favor of the best interest of the child.
« Customised » babies?
This is a baby that can be conceived in both the figurative and literal definitions of the term. Firstly as a “project” designed with certain parameters, then tangibly with artificial fertilization in a test tube.
Why the survival of the fittest?
The customized baby earns a right to exist by meeting certain criteria. For example, by not having any known genetic disease or even not being predisposed to a disease (even though testing doesn’t ensure that the baby will not ultimately be affected); – or by corresponding to the chosen aesthetic criteria: size, eye color, sex …; – or by being genetically boosted to be “better” than the others… Hence this subtitle: the survival of the fittest is a world where human existence yields to technology, where human beings, besides being selected to obtain the right to existence, would then be improved, or even “enhanced”.
What’s wrong with wanting to improve the quality of human beings?
It is a viewpoint on the slippery slope towards eugenics. And the techniques ignore any precautionary principles, making the embryo an object, a guinea pig. Most of the methods are neither safe nor effective. None of this can eliminate suffering from our lives nor make humans any better. It cannot guarantee happiness for either the customised babies or their designers, and it doesn’t contribute to build a fairer or more hospitable civilization…. To be born after the sorting process or genetic manipulation could make those individuals feel as if they exist only “thanks to the technological goodwill” of someone else. A bit like a probationary period throughout their entire lives. Am I good enough, perfect enough? Do I sufficiently meet the specifications that I was designed for? Then why am I not completely, totally, and permanently happy if that’s what I was conceived for? To whom can I complain? And for what? Doesn’t refusing to accept an anomaly, a weakness, entail the risk of nipping happiness in the bud?
What is the objective of your book?
It’s an overall summary on the topic and how we reached this point. What are the techniques used today for selecting and creating babies “à la carte”? How far can technology go: artificial gametes, babies created from 2 people of the same sex, 3-parent IVF? I also discuss the impact for these means of conception on the child, on the parents, on human relationships, on society… Finally, I propose some keys to help encouraging a burst of conscience: rediscover human biodiversity, refuse the genetic bar code, reflect on the ethics of donating, and define the progress for serving mankind… I think it is time to rethink the whole process of artificial reproduction and set boundaries that we can all agree upon. We must step back from our fascination with technology. What biotechnology allows today for surrogacy cannot promise what we all hope for: a better world! One must always ask oneself: does this technical progress really lead to progress for mankind?
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Bébés sur mesure – le monde des meilleurs, Blanche Streb, Artège éditions, 2018.
This book is available in French at your regular bookstore or by order.
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To denounce the actual facts hidden behind the slogan “ART for all”, on April 17, 2018, the VITA Association has opened a “reproductive boutique» for 3 days in the passage Choiseul, a shopping street in the 2nd arrondissement in Paris.
As successively explained by VITA’s representatives: Tugdual Derville, General Delegate; Caroline Roux, Coordinator of Listening Services and VITA’s International Director; Blanche Streb, Director of Training and Research, this latest initiative aims to prevent society from transgressing into a marketplace where the human being is considered as “a product, a custom-made commodity, that is selected and sorted, that can be bought and thrown away”.
The so-called “ART for all” that France is currently debating, aims to extend its’ access which until this point has been reserved for medically diagnosed cases of infertility. Alliance VITA demonstrates how this would shift towards a new reproductive paradigm – the right to have a child manufactured by ART- which would in a general manner lead toabysmal consequences for human dignity, and in particular for the most vulnerable human beings.
In the aisles of this boutique one can select surrogate women, anonymous genitors, choose from a stock of gametes, and order custom-made babies. In this manner VITA denounces:
what has already been performed elsewhere,
what is already happening in France, with impunity,
and what could become legal in the future …
When laws don’t regulate technology, new developments continue to generate new markets and create an increased demand: for the sale of gametes, for renting women’s bellies, for “optimizing” human beings, for ordering custom-made babies, for systematic prenatal and pre-implantation testing, for babies born from 3-parent IVF, for genetically-modified embryos, for artificial gametes, self-begetting, etc.
Whether or not the reproductive market is a liberal profit-seeking business affair, – or state-controlled – in itself it thereby plants the seeds of totalitarianism and eugenics. Because individuals are being treated as objects or machinery whether it is the child, the man who produces the gametes, or the woman who produces a baby.
The French National Consultations on Bioethics demonstrate citizens’ involvement in the issues and their hostility to establishing the “right to have a child” and to the eugenics induced by the new reproductive techniques. The citizens’ response cannot be ignored by President Macron.
Alliance VITA’s covert boutique is “the last appeal to President Macron before organizing a widespread public rally”.
Since the president is the one who must ultimately decide, Alliance VITA asks that France:
protect its principle of non-commodification of human beings and human body parts
defend the dignity of individuals on an international level against the non-regulated ultra-liberal marketing of human beings.
On April 9th, Dr. Sanchez who is in charge of Vincent Lambert at the University Hospital in Reims, France, informed the family members of the decision resulting from the collegial process which had started last September. In his opinion Vincent Lambert’s situation should be qualified as “unreasonable obstinacy”. He said he was in favor of stopping treatment, which means stopping nutrition and hydration, which will lead to his death.
This is a new judicial development in the ongoing family conflict which began 5 years ago. In 2013, Vincent survived the withdrawal of artificial nutrition and hydration, decided by the first collegial procedure with his wife’s consent, but without his parents’ knowledge. When the parents filed an emergency court motion, the judge ordered that nutrition be immediately re-established.
Contrary to what was reported in the media, Vincent Lambert’s condition is not comatose, nor vegetative. Indeed, he is in a pauci-relational state and not at the end of his life. Some family members have been requesting Vincent’s transfer to a specialized unit such as were created in 2002 by the French law Relating to Patients’ Rights, to care for those individuals in a chronic vegetative or pauci-relational state.
Dr. Sanchez warned that nutrition is planned to be stopped within 10 days. The family members will only have this short time to file an appeal with the administrative authorities.
In an open letter to the French President published in “Le Figaro” newspaper on April 11, 2018, Vincent Lambert’s mother asked to be heard urgently by the President to reveal her son’s true condition.
“Like the other 1,700 individuals with the same disability, Vincent should already have been placed in a specialized unit for patients with brain injury. Instead, he was admitted to palliative care, without appropriate treatment, without physiotherapy, which could have allowed him to progress. Several institutions for victims of serious road accidents are ready to care for him. Nevertheless he is still being held in palliative care in a hospital that is unqualified for providing such care. “Tugdual Derville, Alliance VITA’s General Delegate, author of “The Battle of Euthanasia” and founder of SOS End-of-Life, was interviewed live on April 10, 2018, on the Catholic Television “KTO” on the program “At the Source” regarding this situation:“First of all, it’s a very complicated situation, with family members with opposing opinions. On one side his wife and nephew, and on the other side Vincent’s parents and some of brothers and sisters. He is in a “pauci-relational” state, meaning that he cannot express himself clearly, and has not made any advance declaration, but he doesn’t receive any special treatment. He needs nutrition, and even that was withdrawn 5 years ago, in 2013 for 31 days. Professor Xavier Ducrocq, a neurologist who accompanies his parents and who knows Vincent well declares that the fact that he survived that episode denotes his vitality. Someone who can survive that demonstrates a life force, maybe even his determination to live. Vincent Lambert is not at the end of his life, and if the decision is enforced to stop feeding him, it will cause his death. This would be an act of euthanasia, especially since he has no specific treatment, and this would certainly result in his death. We think about the thousands of neuro-vegetative and pauci-relational patients who are in specialized establishments. What Vincent Lambert’s family is requesting is that he could leave the palliative care unit, which is inappropriate for his condition, and be admitted in a center where he could receive the rehabilitative care he has been deprived of for years now. Providing appropriate care for these patients is a critical issue. Because once society no longer considers them worthy to exist, the role and duties of all the others, their relatives, and caregivers who unceasingly devote time themselves are thus being contradicted. “
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For further information refer to: The judiciary procedures concerning Vincent Lambert]]>
As a member of the collective group “Relieve Pain without Killing”, the Alliance VITA association joins them in denouncing the irresponsible conclusion published by the temporary commission of the “CESE” (French Council for the Economy, Society, and Environment) for end-of-life issues, which regards euthanasia as healthcare.
As Alliance VITA’s General Delegate, Tugdual Derville, who founded the SOS End-of-Life service and is the spokesman for “Relieve Suffering without Killing”, sponsored by Philippe Pozzo di Borgo, makes the following statement:
“With this opinion, the “CESE” is seriously undermining the ethics and safety of healthcare practices.
In their attempt to have euthanasia accepted, the “CESE” has invented an extremely dangerous double talk. Administering death to a person is presented as:
the “last care “,
or the “ultimate or care”,
or even a “profound and explicitly lethal sedation”.
We must call things by their rightful name: how can they dare advertise a care or “deep sedation” that is poisonous and exterminates individuals?
It is at the most vulnerable time of our existence, especially at the end-of-life, that nursing practices must be protected from temptations towards euthanasia. The idea is always to relieve pain without ever killing.
The “CESE’s” legitimate praise for palliative care is ruined by this deleterious recommendation that completely distorts the very definition of palliative care.
On the contrary, we want to pay tribute to the courage and pertinence of those “CESE” members who expressed remarkable dissenting opinions. In the Chamber, a discomfort and a total lack of unanimity could be felt. These members wanted to be dissociated from their colleagues and pointed out the danger of a medical practice which would include the administration of death.
In any case, we call upon the French President to protect our healthcare system from being spoilt by opinions in favor of the practice of euthanasia. “
A Canadian Liberal MP, Anthony Housefather, from Trudeau’s government, plans to introduce a bill in May to change federal law to make it legal to pay surrogate mothers, and to buy eggs and sperm. “A woman can decide to become a surrogate mother for a variety of reasons,” says Housefather. “I don’t see the problem if a women decides that it’s an economic opportunity.”
In 2004, Canada ruled on surrogacy, which is now allowed throughout the country, except for Quebec. However, payment remains illegal and is punishable by a maximum prison sentence of 10 years and a fine of up to $ 500,000. Under current law, surrogates can be reimbursed for any pregnancy-related expenses up to 22,000 € (for maternity clothes, etc…). Surrogacy costs are estimated between 60,000 and 100,000 €: including compensating the surrogate mother for the cost of ART treatment (8,000 – 15,000 €), lawyer’s fees, legal advice, insurance, etc.
The Canadian Ministers and Trudeau’s cabinet are divided on the issue of surrogacy. Although some support the idea, there are many voices of opposition, including Employment Minister Patricia Hajdu, a former social worker in Northern Ontario who says, “What I learnt from my experience with vulnerable populations is that there is always a risk, when allowing payment for services, that people in need are likely to provide these services. “ Francoise Baylis, Canada Research Chair in Bioethics and Philosophy, wonders why “we put so much emphasis on what some adults want, while paying very little attention to the standpoint of children who will know that money was spent to have them.” During her research, she has heard testimonials from young people who “feel like objects, a product of commodity because they know they were purchased”. MP Hedy Fry does not agree either. “As a doctor, I am worried. It’s a slippery slope,” she says, pointing out that a pregnancy can always have complications. “It’s not an adequate way to make money.” The women’s rights group also is rebelling against Housefather’s proposed bill. In a press release Diane Guilaut wrote that paying surrogates is “the highest level in human life commodification“, warning that poor women will be exploited in these scenarios.
In Europe, the United Kingdom has also authorized so-called “non-commercial” surrogacy since 1985. No financial transaction is allowed, but the surrogate mother may receive up to 19,000 € to cover expenses incurred during pregnancy. A survey conducted in 2011 and published by the Sunday Telegraph in 2012, revealed that 100 children had been born to surrogate mothers in Britain in 2011. That same year UK clients ordered babies from 1,000 surrogate mothers in India, thus accounting for 50% of the 2,000 surrogate babies born in India.
Caroline Roux, Assistant General Delegate and Director of VITA International speaks out:
“This debate in Canada clearly demonstrates how only a few years after passing the first surrogacy law, which claimed to provide “regulatory guidelines”, the legislative situation is now being challenged to go further. On the one hand the non-commercial aspect is an illusion in view of surrogacy costs and the compensations received by the mother which is a form of payment, and on the other hand, the supply inevitably creates the market as can be observed in Great Britain or with this current Canadian bill. There is simply no way to define an ethical surrogacy. And the transgressions continue non-stop: this should be a strong signal for France, which is currently undergoing bioethical consultations. Whether or not surrogacy is paid for, it is an irreversible and irreparable mistreatment regarding the origin of babies born in this manner, and an exploitation and alienation of women’s body. France has a major role to play in promoting the prohibition of surrogacy both on a European and on a worldwide level, for non-commodification of women’s body and for the respect of a child’s dignity, which cannot be regarded as a commodity to be bought, sold or given away.“]]>
Launched on this past January 18th, the organizers for the French National Consultations on Bioethics gave their first conclusions on the citizen contributions on April 4th. However, the public only has until April 30th to make online comments on the website (etatsgenerauxdelabioéthique.fr.).
According to the National Consultative Ethics Committee (known in French as “CCNE”), 9,700 Internet users have already commented with 24,000 discussion points. The organizers hope to double this number by the end of the month, while simultaneously fearing too many activists’ will respond, especially regarding the most controversial subject: ART. In total, the “CCNE” estimates that 20,000 people will have taken part in approximately 300 regional meetings.
Several events are scheduled for May and June:
a citizen’s committee of 22 civilians will publish a report on clinical genomics and genetic testing; and on the end-of-life.
3 scientific meetings on genomics, embryo research and neuroscience will be held
the CCNE will submit its conclusions on the citizens’ contributions to the OPCEST on June 4th, and publish its recommendations in June or July on the subjects to be included in the bioethics law and on the work of the group who focused on artificial intelligence and health.
Tugdual Derville, Alliance VITA’s General Delegate, who was officially invited by the CCNE to speak on March 8, comments on the progress report:
“What is especially obvious at this stage is the majority of citizens who are unwilling to change the legislation, whereas those changes had been presented as inexorable. Whether on the official website or in regional public meetings on ethics, the majority of the contributors defend the idea of keeping protective boundaries for those who are most vulnerable. This includes palliative care against the prohibition to kill, protecting children against the idea of a right to have a child, misgivings for experiments on human embryos, and reasonable use of artificial intelligence etc.Whether the debates were calm or agitated there is more conviction for protecting those who are most vulnerable. This is an encouragement. The President of the Republic cannot ignore this. Nor can he ignore the small contribution from those who are pleading for the same transgressions that we are contesting. What these National Consultations already demonstrate is that the public demand for these transgressions is very small, and is an ultra-minority population. And that those who are fighting against those transgressions show strong, well-reasoned arguments. We have heard some criticism about the presence of citizens with firm convictions. In our opinion this is a positive sign that despite the organizers’ shortcomings and lack of resources, the process is dynamic and allows citizens to react and freely express their opinions. The President of the Republic, who promised a peaceful debate, cannot ignore this. In the coming days we’ll be taking initiatives to shed light on this major debate, prior to its legislative stage. “]]>
On March 28th, as part of the French National Consultations on Bioethics, a meeting was held at Saint-Louis Hospital by the Île-de-France “Ethical Forum” for counter-expertise assessments. Nine proposals were chosen, including that of Blanche Streb, Alliance Vita’s Director of Training and Research, who spoke on issues related to artificial reproduction.
Full transcript of Blanche Streb’s speech:
“Thank you Mr. Emmanuel Hirsch and your staff for organizing this discussion.
I would like to discuss some thoughts on artificial reproduction with you, and how far it should go. The ethical issues are much more considerable than the injustice, which is indeed a very serious issue, of legalizing the making of babies who would be deliberately deprived of a father.
This evening I suggest we take “one step ahead”.
Indeed, this goes much further, leading to a radical change. Where are we headed if reproduction is no longer restricted to male-female couples, infertile or sterile, and of childbearing age? Isn’t it a paradigm shift, a profound change for humanity regarding the way children are manufactured?
Shouldn’t we agree on limits to be defined?
To clarify, I would like to briefly mention some topics mentioned by the National Consultative Ethics Committee (hereafter referred to as: “CCNE”), on the French Consultations for Bioethics website. The Parliamentary Office for the Evaluation of Scientific and Technological Choices (hereafter referred to as “OPECST”) also made recommendations on these topics.
Therefore, it is possible to include them in the upcoming legislation, since researches are currently underway, including here in France.
3-Parent IVF(cited by “CCNE and “OPECST”): This technique has been authorized in England. And babies have already been born in Mexico and Ukraine. Using gametes from 3 people: one man and two women, it results in a genetically modified embryo. The aim was to avoid transmission of a hereditary mitochondrial disease by the mother.
This technique seems to target the reproductive market, particularly for “rejuvenated” oocytes. Babies have already been born using this technique, in Ukraine for instance, where mitochondrial pathology was not a problem.
Human embryos used as laboratory material and their DNA modified
This topic was selected by the CCNE to be discussed: “Should we authorize scientific research leading to transgenic or chimerical embryos? What about the use of molecular scissors (CRISPR/Cas9) in embryo research? ““OPECST” has made recommendations in favor of this research and suggests modifying the regulations (in particular the Oviedo Convention) to end the prohibition for creating genetically modified embryos, and then examine the possibility of making babies using these methods.
Applying this technique to human embryos would be the fastest and most direct way to manufacturing customized babies.
Artificial gametes
Artificial gametes can be obtained in different ways: by “breaking through the time wall” of an embryonic cell that is programmed to become a gamete, or by “going back in time” with an adult cell (such as a skin cell).
Continually trying to produce a “perfect baby”?
By increasing genetic screening prior to conception or expanding the recourse to screening embryos (doing more pre-implantation genetic diagnosis (PIGD) testing / continually adding sorting criteria: pathologies, predisposition, and esthetics).
What are the scientific, ethical and security issues?
This brings up questions. Biotechnological changes are leading us towards 2 contradictory and perilous directions: that of sorting embryos for the perfect baby, and that of manufacturing a baby at all costs, even to the point of putting his health at risk.
The discussion points that I have just mentioned bring up a new concept of human reproduction: customized and by special order.
These techniques don’t even cure anyone most of the time; but they do create someone. They use ART to conceive potentially non-viable or sick embryos and then need the technique to “fix” them. There is absolutely no guarantee of efficiency; and still less of safety. Nonetheless, some researchers are conducting or already planning human clinical trials, or rather, clinical experiments using humans. It is especially worrisome to imagine children being manufactured under these circumstances: ignoring the precautionary principle, these techniques are using babies as guinea pigs. These modifications can be congenitally transferred thus having a hereditary impact on future generations.
What would this radical change implicate?
Endorsing the right to have a child
Subjugating medicine to serve individual aspirations
France would gradually shift to reproductive business
One step further towards classifying and sorting out human beings and manufacturing customized babies. Taking one step further towards eugenics which is insidiously and increasingly creeping into our society. Because we are asking technology to judge which lives are worth living or no worth living.
Basically, isn’t this radical change a way of subjecting life to a biotechnological domination? Is this what we want for our country and our future generations?
What do I recommend ?
That France should resist to the globalized reproductive market, to more sorting of embryos, to more eugenics.
That France should continue to be a model of resistance, thanks to its bioethical laws, its vision of humanity, its tradition of human rights, its laws safeguarding the principles of inviolability, inalienability and non-ownership of the human body. Inviolability of the human body to protect against the others, inalienability to protect against oneself; and non-ownership, to protect against the power and pressure of money to allow free gifts. This last principle claims that the body, its organs, or its products cannot be sold, in order to protect individuals against themselves from agreeing under the pressure of money or desperate need of it.
France should recall that laws are not made for science, but for protecting individuals, and that bioethics should not be ruled by technological advances.
Conclusion:
During these National Consultations on Bioethics we are asked: “What kind of world do we want for the future? In response, two other questions can help clarify the debates.
does technological progress always go with a progress for humanity?
on what grounds can a desire become a right?
Indeed, what kind of society are we developing if we no longer protect the weakest, the most vulnerable?
Don’t people on earth deserve better than knowing that their right to existence is based on corresponding to certain criteria? “]]>
On March 26, the Paris City Council unanimously adopted Danielle Simonnet’s plan, (elected official from political party “France Insoumise”), to delete the titles of “mother” and “father” on the application forms for birth certificates. These titles will now be replaced by “parent 1” and “parent 2”.
Attempting to abolish what she qualifies as discrimination against same-sex couples, Danielle Simonnet argues: “It is unfair that same-sex couples should not be able to carry out administrative procedures as other couples do“, adding that “this is a breach of equality”. The City of Paris wants to implement this change “as soon as possible“, according to Bruno Julliard, the first deputy to the mayor (socialist party) Anne Hidalgo.
The application forms for birth records for Paris via Internet have not been modified to take into account same-sex couples who are parents. For example, on the birth certificate application form, the existing labels only indicate: “father’s name” and “mother’s name”.
Some towns have already modified the forms to mention “parent 1” and “parent 2” on some school documents. Since 2010, the SNCF (National Train Company) applications for discount cards for large families have been labeled “parent 1” and “parent 2”.
This action by an elected official in Paris illustrates how the law allowing same-sex marriage has sowed the seeds for a number of long lasting organizational changes in French couples’ daily lives. This contradicts the slogan constantly repeated at the time “this law does not change anything for other couples” (more than 99% of all couples). For example since 2013 the family record book has deleted the titles of “husband or father” and “wife or mother”; the rules for attributing the family name to a newborn have become more complex; Opportunities to adopt a child from abroad have been reduced due to more restrictive policies implemented by some countries for lack of assurance that the children will be entrusted to couples composed of a mother and a father. The basic principle of filiation (every child is born to a man and a woman) is being contested by the possibility of same-sex couples adopting children, etc…
This determination to eliminate the titles of mother and father from administrative documents has negative consequences for tens of millions of people and the vast majority of couples.]]>
During their Plenary Assembly on March 22nd in Lourdes, a Declaration was signed by the 118 Bishops of France entitled: “End-of-life: yes to the urgency of fraternity! ». In their text, they urgently call for continuing to develop palliative care and to oppose the possible legalization of euthanasia.
While commending the efforts of healthcare professionals who try to give patients a better quality at the end of their lives, the bishops lament “the fact that there is inequality of access to palliative care and insufficient training for medical staff and caregivers, which sometimes leads to tragic suffering”.
At a time when those who promote euthanasia are requesting a new legislation during the National Bioethical Conferences which are currently taking place, the bishops counsel “to avoid misjudging the real emergency” and call for “ awakening consciences”. They reiterate their opposition to euthanasia due to six ethical reasons:
The application of the last law on the end of life (February 2, 2016) is “still largely a work in progress, and requires appropriate training”. Out of respect for the legislative work done, caregivers and patients, it is too early to judge this law.
Even under guided supervision, facilitating assisted suicide or euthanasia, “would be transgressing the civil imperative of the ‘prohibition to kill’ and would become inscribed into the heart of our society.
Entrusting healthcare workers with the task of carrying out requests for assisted suicide or euthanasia would contradict the medical vocation and its’ Medical Code of Ethics: “The doctor, at the service of the individual and public health, carries out his mission in respect of human life, the individual and his dignity “.
Vulnerable people need “trust and to feel they are listened to in order to share their desires, even though these desires are often ambivalent”. “The distress of those who sometimes ask for an end to their life must be heard. It calls for a more attentive accompaniment, not a premature abandonment to the silence of death. “
The concept of freedom is at issue. Whereas the promoters of assisted suicide and euthanasia claim “the sovereign choice of the patient, his desire to control his destiny” and that “the exercise of this right does not depreciate the person”, the bishops recall that “freedom is never alone, it is always interconnected”…”personal choices, whether we agree or not, always have a collective dimension”.
Providing “medical help to die” paves the way for creating “specialized death clinics”, which would raise the issue of the type and financing. Thus “it is pressuring our healthcare system to impose an agonizing guilt on caregivers and fellow citizens. Everyone may be led to wonder:” Shouldn’t I consider ending my own life one day? “
Tugdual Derville, Alliance VITA’s General Delegate, founder of SOS End-of-Life, and author of “The Battle Against Euthanasia” (Salvator Editions)
“The fact that the bishops are unanimously opposed to euthanasia is not surprising. However, it is significant that they took care of signing this lengthy and uncommon text in a collegiate manner, to address conditions regarding the end-of-life. To recall, as they do with humanity, the link between the prohibition to kill and a true fraternity is essential for our country.As in the Bishops’ Declaration, we also agree that the issue of end-of-life in France calls for other emergencies than passing a new law. We must remain attentive on how the previous laws are implemented: a broad interpretation could be a slippery slope towards masked forms of euthanasia.We must also acknowledge the actual involvement of many Christians in the field of palliative care: as caregivers or volunteers, they contribute, in a creative way, to social fraternity, serving those who are most vulnerable. “]]>
Ever since the Netherlands became the 1st country in the world to decriminalize euthanasia 16 years ago, the requests for euthanasia have been steadily rising. As chairman of the Regional Euthanasia Review Committees Dr. Jacob Kohnstamm, even speaks of it “becoming familiar”.
In early March, the Euthanasia Watch Committee published its annual report. It indicates that 6,585 euthanasia cases were performed in 2017, accounting for 4.4% of all deaths annually, and a rise of 8% compared to the previous year. Ninety percent of patients had cancer, heart disease or nervous system diseases. However, 83 people suffered from serious psychiatric disorders, which is a highly debatable subject. This steady increase since 2002 will probably continue, with increasing pressure to have euthanasia extended to individuals who believe their “life is over” or “are tired of living” at age 70 or 75.
Moreover, a new digression developed recently with the association “Laatste Will” (“Last Will”). Since last September, it advertised being able to provide a deadly powder to its members who desire ” a complete autonomy” for “when and how they want to die”. This association had to stop marketing this product on March 23rd, by order from the prosecutor’s office.
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For further information: “Euthanasia in the Netherlands”]]>
Every year since 2006, March 21st has been known as the World Down Syndrome Day (“WDSD”). This date is a symbol in itself: “3/21” or the 21st day of the 3rd month was chosen to represent the triplication, instead of the usual duplication of the 21st chromosome which is responsible for Down syndrome. Since 2012 the UN has officially observed WDSD, to raise public awareness for the rights and well-being of those with Down Syndrome, for them to be recognized and accepted by the general public.
Only a few years ago, the parents of children with Down syndrome tended to hide their child, but today people seem to show more understanding and kindness, as reported by the French newspaper “Le Figaro”. In recent years social media has even demonstrated a marked enthusiasm for photos and videos of disabled children or young adults, such as those with Down Syndrome. Just one year ago, the little Mélanie presented the weather forecast on French TV (channel 3), seen by 8.3 million viewers. The multinational company Gerber, even selected little 18-month old Lucas, instead of 140,000 other babies to represent their brand.
“Showingdisability demonstrates how vulnerable we all are, regardless of our particular vulnerability,” says Laurent de Cherisey, the social entrepreneur who directs the “Simon de Cyrene” association. “It is a reminder that above all, a business company is still a humane adventure. This can also be a successful wager for the brand which is being represented. “
Last autumn, the TV movie “Special Mention”, which is about the strife of a girl with Down syndrome who struggled to obtain her “French Baccalaureate Degree” (High School Diploma), was a surprising success, attracting nearly 6 million viewers.
To help eradicate stereotypes, Caroline Boudet, journalist and mother of little Louise, published on Facebook in 2015 “Louise is my 4-month old daughter with healthy big cheeks, 2 arms, 2 legs, and 1 extra chromosome “. Her page received “likes” from 100,000 people. Today, she has just launched a video entitled “Our children with Down Syndrome are different, yes, like you are too!” Last October, Franck Stephens, a young American actor and athlete pleaded the cause for funding Down Syndrome research before the US Congress.
Above all other disabilities in France, Down Syndrome is nevertheless targeted in prenatal screening, and does not receive any public research funding. The Jérôme Lejeune Foundation has been committed to providing therapeutic research and consultations. In France there is a real contradiction when comparing prenatal screening, (one of the highest in the world where 96% of fetuses diagnosed with Trisomy are aborted), although France has programs for assisting disabled people to include them in civil society. Annually there are approximately 400 babies with Down Syndrome born in France. The Biomedicine Agency estimates that out of 2,000 fetuses diagnosed with Down Syndrome, 1,500 are aborted and 95 are born alive.
The 2011 French Bioethics law requires that all pregnant women, regardless of their age, be informed that screening for Down syndrome is available during their 1st trimester. This pressure is likely to increase, since in May 2017 a new test was implemented for “Non-invasive prenatal testing” (NIPT) on fetal DNA circulating in the mother’s bloodstream.
For Alliance VITA, the issue of disability and prenatal screening is a major one for the National Bioethics Conferences. The contributions of Alliance VITA to the “CCNE (National Consultative Ethics Committee) focused on this issue:
Resist eugenics, and this implies a change in the disability screening policies, and a better support to the parents when announcing the detection of a disability:
Launch a 5-year plan to lend support and take charge of disabilities, with a substantial budget;
Conduct awareness campaigns to valorize those with disabilities, especially mental disabilities, and their right to be respected and live as any citizen in our society.
Following the mid-September 2017 recommendations of the “flash mission” for the “EHPAD’s” (nursing home establishments for aged and dependent individuals), MPs Monique Iborra (LREM, Haute Garonne) and Caroline Fiat (LFI, Meurthe-et-Moselle) presented a report on the “EPHAD” situation to the Social Affairs Committee of the National Assembly on March 14th.
The report finds a “deep crisis” in these institutions: the “EHPADs” are no longer able to adequately manage healthcare for increasingly more dependent and older people (average age of 85 according to the French Directorate of Research, Analysis, Evaluation and Statistics, “DREES”). The two deputies call on the French government to take immediate measures, but also to reconsider the “EHPAD model itself”.
As a result of the 19 visits to establishments throughout France and trips to the Netherlands and Denmark, 31 measures have been proposed to help solve the current crisis. Among the measures: the rapporteurs recommend to increase the ratio of caregivers (nurses and nurse’s aides) to 60 employees for 100 residents within 4 years. The current ratio is approximately 24.5 caregivers and 6 nurses for 100 residents. This would be the “minimum standard” to ensure that each resident receives 1 ½ hours of care every day. While the government announces a few million € more for EHPAD, the rapporteurs point out that their recommendation requires over 200, 000 recruitments, which would cost 7-10 billion €.
Regarding the EPHAD funding reform voted in the last 5-year term, and still in force, the two rapporteurs unequivocally call for “suspending the reform for dependency tariffs” (proposition n ° 24).
The report also suggests that the National Health Insurance establish free home consultations, at 65, then at age 70, to assess the peoples’ health condition and dependency, and inform them on the aids available.
Similarly, both rapporteurs are in favor of reducing the EPHAD costs for residents: “the resources of many residents (average pension of 1,200€ versus an income of 1,700€) is very low compared to the nursing home prices (1,900 € including 700 € for “meals and lodging”). The MP, Monique Iborra explains that: “a number of people remain at home in questionable conditions, and do not enter nursing homes due to the prohibitive cost”.
This “flash-mission” gave its conclusions on the eve of a massive general national mobilization scheduled for 15 March. Nine national organizations *, retirees, staff from EPHADs and home-based care services rallied throughout France to voice their dissatisfaction: the 1.7 point increase in the social contribution charges “CSG: Contribution Sociale Généralisée”) for 60% of retirees, the declining pensions, staff shortages in nursing homes, elderly persons being neglected or mistreated… Between 39,000 and 68,000 retirees reportedly expressed dissatisfaction in 30 cities, according to accounts from the “AFP: Agence France Presse”, the police, and trade union figures.
This strike occurs about 6 weeks after the first unprecedented massive strike which denounced understaffing and demanded the repeal of a contested price reform for their funding.
On March 15, the Minister of Health and Solidarity, Agnès Buzyn, announced in a press release “that the National Assembly works with all French departments” on a budget plan for dependent people and promised “strategic planning” by early April 2018 for managing care for the aging population.
(French Trade and Labor Unions : UCR-CGT, UCR-FO, UNAR-CFTC, UNIR CFE-CGC, FSU-Retraités, Solidaires, FGR, LSR et UNRPA)________________
For further information:
Nursing Homes in France: Both the Elderly and their Caregivers are Suffering
Solidarity for the Elderly]]>
On March 15, 2018, the French High Authority for Health (“HAS”) published its recommendations for good practice in implementing “deep and continuous sedation until death”.
These recommendations have been awaited since “Claeys-Leonetti” end-of-life law was enacted in February 2016, giving new rights for those at the end-of-life.
Before the law was voted, “deep and continuous sedation until death” had been previously practiced by professionals in rare cases, for circumstances of unbearable, resistant suffering which could not be relieved by any other means, and when faced with a short-term vital prognosis. Basically, sedation alters the patient’s consciousness and thus severs any further relationship. The sedative doses may be proportional to the intensity of the symptoms and reversible. Professionals prioritize using painkillers which allow patients to remain conscious. Conversely, sedating a patient whom we know will not wake up is difficult for both loved ones and caregivers. The official High Health Authority “HAS” text correctly emphasizes this and provides specific support for the various participants concerned to ensure that these situations are not trivialized, and must remain a rare practice.
The law provided that sedation request could be initiated by the patient himself. When stopping or restricting care, including nutrition and hydration, this practice risks to veer towards euthanasia.
Alliance VITA, participates in the movement “Relieve Suffering withoutKilling” which also brings together health professionals, and together they denounced this gray zone during debates for revising the law. Relieve Suffering without Killing” recalled these warnings during the “Let’s Speak about the End-of-Life” campaign organized by the public authorities in March 2017 to promote the law. “The simplistic promotion of a” right to deep and continuous sedation until death, “without justifying its’ objective, may open the door to a drift toward euthanasia (…) On this complex and often sensitive subject, it would be grave injustice to threaten the confidence between caregivers and patients to imply that the law partially allows abolishing the prohibition to kill. “
In an attempt to remove this ambiguity, the authors of the recommendation endeavored to differentiate this type of sedation from euthanasia, whose intention is to provoke death. They explained the six characteristics below:
Deep and continuous sedation until death
Euthanasia
Objective
Relieve a persistent unbearable suffering with doses adapted to obtain deep sedation
Respond to the patient’s request for death
Means
Deeply alter conscienceness
Provoke death
Method
Use of sedatives
Use lethal doses of medication
Result
Deep sedation until death due to natural causes of illness progression
Immediate death of the patient
Time-frame
You can’t say when death will occur
Death is rapidly provoked by the lethal product
Legislation
Autorised by law
Illegal, (homicide, poisoning …)
The recommendation more clearly defines safeguards for avoiding expansive interpretations, while accepting the complexity of situations at the end-of-life:
Collegiality of the decision and the evaluation of the request;
Resistant aspect of pain, with no other alternatives for relief;
Short-term vital prognosis: beyond a few days time, a reversible sedation must be practiced.
The most critical situations concern the limitations or treatment stoppage in situations whereby people cannot express themselves.
The “HAS” specifies that the constrictions for limitations are mainly for artificial ventilation, in very specific cases, which qualify as unreasonable obstinacy and that patient’s vital prognosis is short-term. “The doctor may be confronted with this situation when there is a request to stop life-sustaining treatments: mechanical ventilation (for example: patients undergoing cardiopulmonary assistance, patients with amyotrophic lateral sclerosis or other neurodegenerative diseases and dependent on artificial ventilation, etc.). Patients who suffer from a disease for which the absence of treatment will cause death only in the long term or, will not lead to unbearable sufferings, are not immediately affected by this law of deep and continuous sedation. Each case is unique: the treatment, adapted to the symptoms and to the patient’s request, will be given, including the possibility of appropriately measured sedation. “
Alliance VITA declares that ambiguity still persists for those in a pauci-relational state, unable to express themselves. “The deep and continuous sedation until death aims to prevent a possible pain. If the only life-sustaining treatment is artificial nutrition combined with artificial hydration, its arrest may lead to a longer duration of deep and continuous sedation until death (of the order of 7 to 14 days): this duration requires special support from relatives and caregivers “. Such an analysis would require further clarification. Recall that the people mentioned are not at the end-of-life, and a priori do not suffer from unbearable suffering which cannot be relieved, but are unable to clearly express themselves.]]>
On Thursday, March 8, 2018 Alliance VITA had a long interview with the French National Ethics Consultative Committee: the “CCNE” as part of the National Bioethics Conferences.
These hearings are part of a larger program established by the “CCNE” including public debates, internet contributions via their website www.etatsgenerauxdelabioethique.fr, a citizens’ committee composed of individuals selected by a polling institute; contributions from ethical committees from national establishments such as the medical research unit: “INSERM”, the National Center for Scientific Research: “CNRS”, and both the Academies of Medicine and Sciences. These interviews by the National Ethics Committee will not be held uniquely for associations, but also for focus groups, learned societies, religious organizations and health professionals.
The CCNE will summarize these interviews and send them by June 4th to the OPCEST and to the government. The CCNE will give their own conclusions in July 2018 on a number of issues considered during the National Bioethical Conferences.
After their meeting with the CCNE President, Professor Delfraissy, the three Alliance VITA representatives, Tugdual Derville, General Delegate, Caroline Roux, Deputy General Manager and Head of Listening Services, and Blanche Streb, Director of Training and Research, spoke in this order before a CCNE delegation of 8 members, on the main issues for the National Bioethical Conferences.
Based on their experience in listening services (SOS Baby and SOS End-of- Life), the Alliance VITA representatives requested that priority be given to infertility issues (causes, prevention and genuine therapy) and handicap issues to help accommodating those with disabilities. They called for an ethical reaction to fight against eugenics, researches which destroy human embryos, interventions on embryos’ genomes (especially the “3-parent IVF”, and using CRISPR-Cas9 on embryos) resulting in genetically-modified human beings. They also requested protection for the child who is the most vulnerable in the so-called “ART for everybody” slogan; emphasizing the slippery slope leading to procreation and even surrogacy just for convenience purposes.
More generally, in view of some inviolable principles, Alliance VITA criticized the unceasing reconsideration of ethical boundaries which had previously been voted by law. Accompaniment for those at the end-of-life, and issues related to artificial intelligence were also discussed.
After responding to CCNE’s questions, Alliance VITA ultimately cautioned of the inherent risk in passing new bioethical laws. France could become a global or state-controlled reproductive marketplace. If ART is no longer performed only for therapeutic reasons, the current healthcare model, based on the non-merchandisation of the body and impartiality for users, would be threatened. If ART becomes a business, whereby the rich “benefit”, it would be the beginning of inequality for the French population of today, and for children of tomorrow, because the law would no longer be able to defend the weak against the desires of the strong.]]>
of childbearing age”.
In June 2017, a 69-year-old French man requested to have his frozen gametes returned to have ART performed in Belgium. The Biomedicine Agency was then forced to accept transferring his gametes. The following month, in July 2017, the Advisory Council of the Biomedicine Agency recommended establishing an age limit for ART at age 60 for men and age 43 for women.
The issue being debated is the age for childbearing. Most professionals already practice an age limit, especially since 2005 when the National Health Insurance stopped reimbursing ART for women over 42, since thereafter successful results becomes diminished.
The Administrative Appeals Court in Versailles, in referring to the legislators’ intention, considered that “the unborn child must be shielded from being exposed to certain inherent risks with ART” and equally that of “women due to the harrowing experience of ovarian stimulation techniques which are not without risk”. The “childbearing age” should be defined as “the time whereby the procreative capacities of men and women have not been altered by natural effects of aging”. The Court relied on “the most recent available scientific data, noting that after age 59, the male reproductive capacities are generally modified due to the statistical increase risk of malformations and other medical complications “.
The age limit for becoming parents via ART should be included in the current revision of French bioethical laws.]]>
Subsequent to a press release by the National Federation of Medical Gynecology Colleges (FNCGM) *, a hundred professionals immediately retaliated in defense of natural contraceptive methods based on observation of female fertility periods.
In their press release, the FNCGM discredited “natural birth control methods” as being unreliable; quoting “an approximate failure rate of 17-20%“. These gynecologists allege that there is a connection between the high abortion rate in 20-24 year olds and the use of natural birth control methods.
To refute this misinformation, over a hundred of caregivers, doctors, pharmacists, gynecologists and midwives have asked “to cease misinformation on natural methods”. In the aftermath of the press release and numerous articles that followed, it seemed “important to rectify and clarify the situation for women to receive genuine and truthful information” regarding “the various amalgams”. In addition, on March 1st, an on-line petition was created. Due to the amalgams with other contraceptive practices, they reiterate that “very reliable natural methods are available, have been scientifically evaluated and have been proven to be efficacious on a worldwide basis”. They have been developed by medical researchers and the techniques are taught by accredited instructors. They explain that “to guarantee a high rate of effectiveness, the methods require rigor and training, (no autodidact or self-taught improvising)”. They testify that “numerous women and couples are perfectly satisfied with these methods and with the ease of incorporating them into their life-style”.
The elevated number of abortions in France pertains to what the authorities refer to as the French contraceptive paradox. According to the Inspectorate General of Social Affairs “IGAS”, 72% of French women who aborted said they were using contraceptives when their pregnancy was announced. The ramification whereby complete trust in technology is proven infallible makes an unplanned pregnancy more arduous to accept. Abortion is frequently a systematic recourse, often due to outside pressure from the partner; or pressure from family members for teenage pregnancies. Nonetheless, “It is illusory to believe that fertility can be perfectly controlled. [1]”: pregnancies occur even when using IUD’s, and when taking birth control pills, (which can sometimes be forgotten).
For those aged 20-24, (the group with the highest overall number of abortions), the actual proportion decreased slightly between 2010 and 2016. As the French National Institute for Demographic Studies “INED” states: “Despite more tolerant and diversified family life styles, (Déchaux, 2009), restrictive criteria for reproduction prevail. Besides the requisite of being a couple (and having a stable relationship with a mutual consensus to become parents), there are now supplementary norms concerning age, financial resources for child-rearing, and the “ideal” spacing between 2 births. These criteria regulate contraceptive and reproductive practices throughout a woman’s reproductive life cycle, including the period of “sexual adolescence”. Despite a high use of contraception and the progress made in fertility control, the assertion of abortion as a right, as well as the extension of the “adolescent” period, have led to an increase in abortion rates for the 18-25 year-old group.”
Following the crisis with the 3rd and 4th generation birth control pills, women have become more reluctant about using medical contraception. Currently, a new trend is developing where some women are reconsidering their contraceptive choices and are requesting a more “organic” or natural approach for their bodies’ overall health. Gynecologists, and society as a whole, need to discuss the challenge launched by these women’s aspirations for being treated more “naturally”, whith more respect for their body. There is room for discussion, provided it is an open, non-biased discussion.
[1] IGAS 2010, French report on abortions performed]]>
A recent appeal launched by the French Society for Counseling and Palliative Care “(SFAP)” is entitled “YES to comforting, and supporting. NO to euthanasia.”“We refuse to let ourselves be trapped into a 2-sided debate that reduces patient care at the end-of-life to a proposition of euthanasia.” The manifesto was launched after several MPs signed an op-ed on February 28 in the French newspaper, “Le Monde”, insisting on a new law for euthanasia and assisted suicide.
According to the “SFAP” with its’ 10,000 caregivers and 6,000 volunteers: “ The recommendations for implementing the Claeys-Leonetti Law of 2016 have not even been published, therefore it is essential not to increase patients’ vulnerability by constant legislation evolutions.”
Alliance VITA strongly encourages signing this manifesto, which opposes “an ultra-liberal society composed of autonomous individuals, completely independent, who control their life and death” and advocates “a society of solidarity and interdependence ready to assist those who are vulnerable”. VITA’s End-of-Life SOS Service follows this line, by offering listening support to the individuals affected, their loved ones and their caregivers.
Tugdual Derville, Alliance VITA’s General Delegate, author of “The Battle of Euthanasia” (Salvator Editions) declares:
“Today, both professionals and volunteers in palliative care insist that euthanasia is incompatible with the palliative approach. While some people with outspoken opinions attempt to persuade and confuse, it is essential that the voice of palliative caretakers be heard and supported. Their mission brings comfort to the people they are taking care of, handling complex situations, which have nothing to do with minimizing slogans, or easy solutions”.Facing the challenge of the end of the life of the people they are taking care for, their practice is a source of pacification. They assume the responsibility for handling complex situations for these individuals; which is incongruous with minimizing slogans, or proposing easy arrangement concepts”.]]>
An Op-Ed article signed by 156 French MP’s entitled: “It is appropriate to give the patients at the end of their life free disposition of their bodies” was published on February 28th in “Le Monde”. The majority of those signing are from President Macron’s party (“LREM”: Republic on the Move) and they urge to legalize “active help in dying”.
Jean-Louis Touraine, MP, author of a recent bill on euthanasia, and head of a study group on the end-of-life in the National Assembly initiated this Op-Ed article. Former Prime Minister Manuel Valls is also among the signatories.
The article exhorts “to end the hypocrisy that prevents from helping those who wish to be helped and inflicts a painful agony to everyone. It is advisable to give patients at the end of their life free disposition of their bodies and of their destiny “. They refer to a recent IFOP survey stating that “a high number of French people seek relief” by going abroad to countries that have already legislated on the subject (Belgium, the Netherlands, Switzerland …). They declare that euthanasia is already being practiced illegally in France.
The signatories assert, that “the current palliative care options are not satisfactory for all individual situations and patients’ suffering at the end-of-life”. They insist that no “significant innovations” have been introduced in the Claeys-Leonetti law dated February 2, 2016. It should be noted that this law is barely starting to be known, understood and implemented, since the application decrees are dated from August 2017. Several official initiatives are ongoing or planned in the short term future, to evaluate whether taking charge of the end-of-life situation is improving in France *.
Alliance VITA considers that this ideological offensive is attempting to occult the genuine end-of-life issues at hand. They denounce this insistence to force through still another end-of-life legislation, when the priority is to assess how the new Claeys-Leonetti law is being applied in real-case scenarios. Whether people are in hospitals, nursing homes or at home, the main priority is to improve palliative care, especially pain management, and inter-generation solidarity. Indeed, in the few foreign countries which have legalized euthanasia, the serious “ethical slippage” observed is a warning for acting with utmost caution. (Refer to our analysis on Belgium and the Netherlands, for example).
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* The government launched an investigation via the General Inspectorate of Social Affairs (IGAS : Inspection Générale des Affaires Sociales); The Parliament is planning a study group and hearings in the coming weeks; the EESC also took up the subject; and medical assessments on “deep and continuous sedation until death” are in progress via the National Center for Palliative and End-of-Life Care and the French Society for Accompaniment and Palliative Care (SFAP : Société Française d’Accompagnement et de Soins Palliatifs) ]]>
The highly controversial trial of a 29-year-old man accused of “sexually abusing a minor” aged 11, began on February 13, 2018 at the Pontoise Criminal Court, Val-d’Oise, France in closed proceedings.
After debating for several hours, the criminal court dismissed the case due to lack of jurisdiction. According to Article 469 in the Code of Criminal Procedure, they asked the prosecution to submit their case to a more competent court: “If the case and the description of the offense referred to the criminal court are likely to result in a criminal sentence, the court refers to the Public Ministry to appeal as it will deem appropriate (…) »
The question of the girl’s consent is central to the debate. Her family had filed a complaint for “rape” for the events in Montmagny on April 24. But the prosecution deemed it was willful consent, since she was not physically constrained. This rebuttal was invoked to avoid “rape” charges, which would be punishable by 20 years in prison due to the alleged victim’s young age. For an offense of “sexual assault”, the perpetrator would only be liable for 5 years in prison and a 75 000 Euros fine. (For further details click here).
At the end of the hearing, the complainants’ lawyer, Carine Diebolt declared a “victory for the victims“. She added that the prosecution will “most likely” appoint an investigating judge and “the case will be thoroughly investigated”.
Another case was also widely criticized in November 2017 when a 30-year-old man was acquitted after the rape of an 11-year-old girl. Numerous requests, including those from child protection associations, are asking for a minimum age of consent to be defined for the sexual act.
Thus the French government has decided to take legal steps. President Emmanuel Macron would like to set this age at 15 years old, while the Justice Minister, Nicole Belloubet, has mentioned age 13 for the threshold age. The bill against gender-based violence, which will determine this cut-off age, is scheduled for March 7 at the Council of Ministers. It is co-sponsored by the Secretary of State to the Prime Minister for Equality between Women and Men, Marlène Schiappa, and the Justice Minister, Nicole Belloubet.]]>
Chimeras are embryos which have mixed animal and human cells. At the annual meeting of the American Association for the Advancement of Science (AAAS) * recently held in Austin, Texas from February 15-19, a research team announced that they had created sheep-human hybrid embryos.
Their declared objective is to “cultivate” human organs inside animals, to obtain grafts to cope with the shortage of organ donations. This research relied on previous experiments conducted by some of the same team members who were able to develop human cells in pig embryos.
Hybrid embryos were therefore created using sheep embryos, produced via IVF, in which they injected 0.01% of human stem cells, either from human embryos or somatic (adult) cells reprogrammed as stem cells. The experiment was halted after 28 days of embryonic development.
This research intends to ensure embryonic development, and implantation to result in newborn baby animals from which the organs would be removed (heart, lungs …).
This experimental research project is very controversial. It raises very important ethical questions: not the least of which is that human embryos are being treated as objects. It raises the issue of the borderline being respected between humans and animals. Although the ratio of human cells is very low, their proliferation during embryonic development is possible. They could even settle in the brain or the sexual organs of animals, says Hiro Nakauchi, stem cell biologist at Stanford University who collaborates with Professor Ross. What would be the consequences?
Besides, the ratio of human-animal cells, during a press briefing, “is not yet enough to generate an organ” Professor Ross declared. Approximately 1% of the embryo needs to be human for organ transplantation to function, reports The Guardian. To make progress, there is a risk of pushing the research tests forward, by injecting more and more human cells. A potential graft could still be rejected, with the recipient recognizing the animal cells as a “foreign body”.
Alliance VITA points out that French law prohibits the creation of chimerical embryos. Nevertheless, the question is being discussed in the current National Bioethical Conferences, under the heading “Stem Cells and Embryo Research”: “Should we authorize scientific research to produce embryos which are transgenic or chimerical? Extreme vigilance is required not to exploit the public’s opinion, the individuals and their families waiting for transplants with the promise of these experimental chimeras. Far from being perfect, they may never exist nor function. Furthermore, the human embryo must be respected and using for experiments by sorcerer-apprentices should be condemned.
* American Association for the Advancement of Science
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For further information:
On February 19, the French government appointed a commission to prevent abuse and/ or neglect of the elderly and disabled individuals, in coordination with the law enacted on aging, effective since January 1, 2016.
This commission is tasked with “promoting correct treatment, fighting against abuse, making suggestions concerning the risks of abuse or neglect, whether in the individual’s home or in institutions”.
Abuse of the elderly can be either physical or moral and is mainly due to staff shortages in the (“EPHAD”) nursing homes. Pascal Champvert, President of the Association of Directors for Serving the Elderly (“AD-PA”) denounces this as an “enormous” problem and adds “we needa strong commitment from the President on ageing, and discrimination against the elderly, which constitutes the primary abuse.
Much abuse occurs at home, sometimes by the families themselves who don’t have enough support, and become exhausted. “With too little home-based staff, we end up delegating to spouses or children who also become worn out. They themselves are being abused and mistreated, and unintentionally, they also abuse and mistreat others, “says Pascal Champvert.
This measure comes in response to the protest movement by the “EHPAD” nursing home professionals, which has been gaining momentum over the past several months. After the nationwide strike held on January 30th, another protest is scheduled for March 15.]]>
On February 13th, the French Biomedicine Agency (“ABM”) published its report on the application of the bioethics law, just three weeks after the official launch of the National Bioethics Conferences on January 18, 2018.
The ABM reviewed 4 major topics for which it has been declared competent: organ donation, assisted-reproductive techniques (ART), prenatal diagnosis and embryo research. According to the report, the 2011 bioethics law has generally lived up to expectations. However, the ABM questions the issues related to the very fast progress of science and technology. Several risks that the Bioethics law could deteriorate, and lead to major ethical dilemmas, are noted in the conclusion as well as some recommendations for future action plans.
For embryos and embryonic stem cell research, the ABM questions again the authorization of research, in cases where no other alternative exists.
But whereas the ABM report questions the use of induced pluripotent stem (iPS) cells as a reliable alternative to the classic embryonic stem (ES) cells, the authors, at the same time, paradoxically wish to debate on the artificial gametes produced from these same iPS cells, to possibly manufacture embryos for research, although this is currently banned.
Since both INSERM and the French Medical Academy have recommended conducting genome modification research on embryos and gametes, the ABM also tables the question of authorizing this research.
The agency does not mention ART for cases other than medical indications (for single women or same-sex couples), nor auto-preservation of oocytes for non-medical reasons, nor the anonymity of the donation of gametes. These 3 issues are part of the debate in the current National Bioethics Conferences.
On the other hand, the ABM addresses the ban on post-mortem insemination. The agency recommends setting an age limit for insemination with ART and authorizing the dual donation of gametes, which is now forbidden, and specifies that at least one member of the couple should be genetically related to the unborn child.
As proof of the growing pressure to obtain gametes, the ABM advocates relinquishing the requirement for the donor’s spouse to consent to a donation. They go as far as advocating the management of oocyte donations to the lucrative private sector.
Wouldn’t this circumvent the principle of gratuity?
The ABM report also proposes facilitating the procedures involving donation of embryos, which currently require authorization from the High Court’s president for both the donor couple, and the recipient couple, considering the responsibility of transferring one’s own embryo to another couple.
The ABM deemed it inadvisable to review the presumed consent to organ donation, but finds it appropriate to link this to the advance directives.
The agency suggests extending the reciprocity system for organ donation to an international level (for living donors and recipients). In addition, the ABM proposes harmonizing the collection and donation of hematopoietic stem cells (cord blood, bone marrow donation, etc.).
Scientific progress, such as genome sequencing, continues to raise more ethical issues. Without offering any conclusions, the ABM instead tables a series of questions. For example: what would happen if prenatal screening included sequencing the whole genome; what would the consequences entail?]]>
On 15 February 2018, the Appeals Court in Versailles, France validated two adoption applicationsfor children born by assisted-reproductive technology (ART) for 2 homosexual female couples.
Last year, on June 29, 2017, the High Court in Versailles had refused the applications for full adoption on the grounds that “perhaps one day, a hypothetical father would come forth to claim” his child.
For the Appeals Court, “the possibility that the biological father would one day desire to file claim for his child (was) purely hypothetical without any consistent evidence”.
In September 2014, the Court of Cassation gave a verdict aimed at legitimizing full adoption by the female spouse of a woman who had obtained the child abroad by artificial reproduction with an anonymous donor. Since then, several French Appeals’ Courts have given similar rulings. In the “Cassation Opinion” dated September 22, 2014, n°s. 14-70.006 and 14-70.007: “The use of assisted-reproductive techniques (ART) with artificial insemination by an anonymous donor abroad, does not preclude the child from being adopted by the mother’s female partner, provided the legal conditions for adoption are met and that it is in the best interest of the child. “
During the debates on same-sex marriage Alliance VITA already warned against this domino effect. The important issue remains that of the interest of the child. As Alliance VITA has pointed out invariably, the adoption process is being turned upside-down. Adoption is not intended to “obtain” a child for people who have conceived it illegally. Adoption is intended to provide a family to a child who is already living, a child who has suffered a significant trauma from being accidentally deprived of his father and / or mother. Instead of healing an injury, the adoption process is now being used in these cases to endorse the initial abuse of the child.]]>
Established on September 9, 2013, the French National Suicide Observatory (“ONS”) recently published their 3rd report entitled “Ethical issues in suicide prevention, the specific case of teenage suicide “. Published on February 5, 2018 the report declares that the suicide rate in France decreased by 26% between 2003 and 2014, although it still remains one of the highest in Europe, ranking 10th out of 32, behind Finland, Belgium and a number Eastern countries.
According to the French Center for Epidemiology on the medical causes of death of Inserm (“CépiDcInserm”), 8,885 suicides were officially reported in metropolitan France in 2014. This figure is equivalent to 24 deaths per day, or one death every hour. Since the report only tallies deaths which are recorded as voluntary, the figure of 8,885 suicides may be underestimated by 10%; the actual figure could reach 10,000.
One section of the report deals with the suicidal behavior of young people, a major public health concern, which was not evaluated in the previous two Observatory reports. After car accidents, suicide is the second leading cause of death among 15-24 year-olds, accounting for 16% mortality in 2014. Although this suicide rate is relatively low compared to other age groups, it seemed pertinent to evaluate this phenomenon. The suicide of a young person has an undeniable effect on his loved ones, his acquaintances, the media and society in general.
In metropolitan France, the average suicide rate was 17 per 100,000 inhabitants for the years 2012-2014. More men committed suicide than women (23.1 vs. 6.8 per 100,000). Suicide rates increase sharply with age according to this report. The highest rate was between ages 45-54, and after age 75, with respective numbers of 33.4 and 59.4 per 100 000 men. In addition, suicide rates are higher in the northern half of France. Significant differences were also observed in socio-professional categories, especially among farmers (296 deaths recorded in the years 2010-2011).
In 2015, following an attempted suicide, 78,128 patients were hospitalized in a medical or surgical ward; a figure that has remained stable since 2013. Among these patients, who are mainly female, there is a 1st peak for young girls aged 15-19 (averaging 39 per 10,000) and a 2nd peak in the 45-49 year-old group (averaging 27 per 10,000). On January 26, 2018, the Health Minister, Agnès Buzyn, in a speech on psychiatry announced that over the next 2 years, she intends to implement psychiatric help for patients discharged from hospitals after an attempted suicide.
This recent report contains a section focused on the ethical issues of suicide prevention, in particular a possible «right-to-die” issue, stating that according to “French law, the right to die constitutes a right of freedom (one is free to kill oneself) but not a right to be helped to die (one cannot claim assistance in dying as a due). In countries that allow the “right-to-die”, it is important to look at the implications on suicide prevention. There are concerns about the difficulty of organizing suicide prevention in countries where assisted or medically-assisted suicide or even euthanasia are legally authorized or under discussion. Suicide may thus be more considered more readily as a possible option, without genuinely exploring other alternatives “(…)”. The report encourages further research on listening lines, developing off-site, or remote support methods, emergency prevention, and the relationship between end-of-life legislation and suicide prevention. It also recommends targeting research on prevention in young people, where there is still much to discover.]]>
After evaluating advance directives for a year, the French National Center for Palliative and End-of-Life Care (“CNSPFV”) released a twofold survey* on February 6, 2018, commissioned by the French Market Research Institute “BVA” entitled “Advance Directives, in the opinion of the French and General Practitioners. “
This survey reports, that 85% of the general practitioners and 60% of the French age 50 and over, are aware that an end-of-life law exists. The majority became aware of the 2016 law thanks to the media, demonstrating that it is gradually becoming known.
In this age group, 42% are aware that this end-of-life legislation provides for advance directives, but only 19% exactly know the details. Similarly, 85% of general practitioners are aware of legally established guidelines, but only 36% really know what it is about.
Most of the French who were surveyed (77%) are favorable to the possibility of drafting advance directives. Yet only 11% of those aged 50 and over (and 4% of general practitioners) have already written them. The majority who have drafted their advance directives are women (13%), people aged 65 and over (14%), people in poor health (22%) and people with a household income less than 1,500 €/month (16%).
In the age 65 and over group, the statistic of 14% having drafted advance directives appears relatively consistent, given the margin of error for polling, compared with the 14% of French who declared having done so, in an Ifop survey commissioned by VITA in October 2017 (which reported 15% in the 50-64 year-old group; and 17% for those 65 and over).
Among the others surveyed who have not written their advance directives, 32% say they are ready to do so, although 51% do not want to, and 6% remain undecided.
Among the reasons cited for not writing their directives, 47% say they trust their loved one to decide what will be best for them at the end of their life, and 33% don’t want to make those kinds of plans for the future. For the general practitioners, 44% say they don’t know what they will want when the time comes.
Among the general practitioners, 77% discuss the issue with their patients, 60% report being questioned directly by their patients, and 30% attest to being questioned more than in the previous years. For physicians who discuss advance directives with their patients, 61% think this is an easy topic to discuss and 85% felt that the conversation was not difficult.
In 2017, the French National Center for Palliative and End-of-Life Care “CNSPFV” led the first national public awareness campaign entitled “The end-of-life; shall we talk about it?” Regional meetings were also organized to collect questions and feedback on advance directives. This year, they intend to do another campaign. A working group to evaluate the promotional efforts for advance directives has determined that citizens are beginning to focus on the issue. In addition, it is noteworthy that advance directives may initiate discussions on patients’ values, which may influence choices for their end-of-life care.
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* All representative of the French population: 201 General Practitioners were surveyed between January 8-12, 2018, and 964 French people aged 50 and over between January 19-23, 2018.]]>
Doctors in Newcastle, UK, have just been granted permission to create Britain’s first “3-parent babies” for two women with mitochondrial diseases.
On Thursday, February 1st, Britain’s ethical authority on human reproduction, the Human Fertilization and Embryology Authority (HFEA), granted approval for the in vitro fertilization procedure (IVF) for 3 parents. In February 2015, the British Parliament gave the green light for this artificial reproductive technique to eliminate the risk of transmission of a genetic disease by the biological mother. In March 2017, the Newcastle fertility center received its license to use this procedure.
After reviewing the medical and family history of the two women – who wish to remain anonymous – the HFEA judged that “any child conceived could have a serious, progressive illness that would greatly affect his quality of life.” In this scenario, all the embryos would be infected with the disease and thus pre-implantation genetic diagnosis (PGD) would be of no use.
The 3-parent IVF technique creates a human embryo in vitro, by using gametes from 3 three different people: one man and two women (the mother and an oocyte donor). The objective is to give birth to a child without the disease transmitted by organelles present in the ovum of the mother: the mitochondria (refer to Notexpert).
Mitochondria are essential to allow all the cells of the human organism to operate properly. Moreover, they contain DNA, 1% of an individual’s total genome. Any embryo thus conceived would contain all 3 parents’ DNA: both parents’ chromosomes and the DNA transmitted by the oocyte donor’s mitochondria.
Vertiginous ethical issues are raised by this very controversial technique. It is deliberately imposed on the child, and represents significant risks for his health. The interactions between nuclear DNA and mitochondrial DNA are still poorly understood; thus it is even more perilous to add the mitochondrial DNA of a third person. Moreover, according to the technique, abnormal mitochondria may nonetheless still be present in the newly created embryo. Therefore the risk of pathologies related to defective mitochondria cannot be entirely eliminated. Thus, nothing guarantees that the child will be in perfect health nor exempt from unpredictable negative side-effects. It is impossible to have preliminary clinical verifications, since the child will be his own full-scale test specimen.
In April 2016 the media reported a first child born in Mexico using this 3-parent technique. Since then, the technique was also used in Ukraine in 2017 to give birth to many other babies for reasons totally unrelated to mitochondrial diseases but only as a remedy for some forms of infertility. Injecting mitochondria from younger women’s oocytes would be presented as a remedy attempting to “rejuvenate” older women’s oocytes.
Alliance VITA reminds that it has never been proved as yet that this technique is safe. Since it is certain that those embryos will carry a serious disease, it is inconceivable to use an artificial reproductive technique to create them at all costs. It is completely irresponsible to put at risk both the child and its family by genetically modifying human embryos. Such a violation of Human Rights should unquestionably and whole-heartedly be condemned by the international community.
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Over the past several months in France, overwhelming evidence has been accumulating on the living and working conditions in the “EHPAD’s” (nursing home establishments for aged and dependent individuals): lack of resources, an exhausted nursing staff, patients’ suffering.
On January 30, 2018, in an unprecedented general strike, several tens of thousands of people rallied throughout France to denounce these living conditions. The strike mobilized both staff and managers of public and private nursing homes, all employee trade unions, patient associations and their families.
The EHPAD’s are chronically understaffed, and can no longer provide for the patients’ well-being (safety and dignity), because they are more numerous, and older, and need more care. In French nursing homes, the rate of caregivers per resident is 0.57, which is low compared to Northern European countries where this rate is one to one.
In addition, institutions are struggling to recruit caregivers. According to the National Health Insurance, the rate of work-related accidents and occupational illnesses are increasing (+ 2% in one year and + 45% over 10 years), especially a rise in lumbago or lower back pain. The average percentage rate is 9.4%, compared to 6% for construction workers. According to the parliamentary report submitted in September 2017, the absenteeism rate of “an average of 10%” is also troublesome and causes additional exhaustion for the working caregivers.
According to the French Directorate of Research, Analysis, Evaluation and Statistics (“DREES”). there were 728,000 elderly people attending or living in nursing homes in 2015. The parliamentary report specifies that the current population has evolved in recent years: “People entering nursing homes are over 85 on average, and the average stay is 2 ½ years […]. They present multiple pathologies, complications from chronic diseases, and some suffer from behavioral disorders…”
Launched more than ten years ago, the Solidarity Plan for the Elderly (2007-2012) was intended to make improvements in the quality of life in retirement homes, explore means of sustainable financing for those who lack self-sufficiency, and control costs for staying in an EHPAD … Even if more resources have been allocated for EHPAD’s in recent years, the means implemented are still inadequate. How can France better address this challenge of an aging population?
In addition, a pricing reform is being implemented in accordance with the December 28, 2015 law for adapting to aging, which provides for progressively aligning the allocations for public and private nursing homes from the year 2017 onward, until 2023. This very unpopular reform could represent a cut-back of 200 million Euros over 7 years to public nursing homes and could force staff reductions in many nursing homes, declares the French Hospital Federation (“FHF”). Nevertheless, the Health and Solidarity Minister, Agnès Buzyn, confirmed that the reform would continue. She announced that 100 million Euros would be provided by National Health Insurance budget to be allocated to the EPHAD’s and an additional 50 million Euros would be reserved for EPHAD’s facing difficulties (January 25, 2018 announcement).
With the increase in life expectancy, and consequently the aging of the population, the problems associated with an advanced age deserve a more in-depth analysis, as well as implementing sustainable long-term solutions. Caring for the elderly who are no longer self-sufficient is a major issue, one that not only concerns public authorities, but also families and society as a whole.]]>
A new legal phase ended on January 31, 2018, in the doleful case of Vincent Lambert. The State Council rejected the parents’ appeal requesting urgent suspension of the fourth collegial procedure initiated last September by Dr. Sanchez, which could lead to care being stopped, and therefore lead to their son’s death.
Vincent Lambert has been at the University Hospital in Reims since 2008, in a pauci-relational state following a serious car accident. Since that date, three collegiate procedures for possibly stopping due care have taken place at the hospital. Following Dr. Kariger’s departure, the first two procedures are no longer relevant, and the third was suspended until further notice by Dr. Simon, who also left the department (see the reference note on all the legal proceedings concerning Vincent Lambert).
The parents considered that the fourth collegiate procedure was legitimate. They filed an appeal with the Administrative Court in Chalons-en-Champagne, where their case was rejected. They then appealed (via an emergency procedure) with the State Council to have the collegial procedure suspended and cancelled.
The French State Council judges ruled in accordance with the rapporteur’s arguments, whereby the referred procedure did not conform to the situation, since the collegial procedure is only a preparatory step intended to clarify the situation for the doctor in charge of making the decision. Only the final decision can be appealed using an emergency procedure.
Following this judgment, the collegial procedure initiated by Dr. Sanchez is likely to continue in the coming weeks. Whatever the nature of the resulting decision, it will undoubtedly be legally contested since Vincent Lambert’s family remains deeply divided on what should be done for his welfare.]]>
The process includes 3 major phases, with some partially overlapping dates on the timetable. The first two correspond to the French “National Consultations on Bioethics” as specified by the July 7, 2011 law.
1) The phase for public debates
2) The phase for the national organizations’ reports
3) The phase for drafting the law
I – The phase for public debates: January to April-May 2018
During this phase the population will be consulted: citizens, associations, scholarly groups, various local organizations, etc.
A) National website
In early 2018, the website should be launched to allow every public citizen an opportunity to express his opinions and suggestions.
B) Consultations organized by the Regional Ethical Review Boards
They are organized in each of the 13 main French regions, and coordinated by the National Consultative Ethics Committee.
They usually consist of:
– conferences/debates on one or two themes chosen by the Regional Ethical Review Boards, and are to include at least one lecture addressed to youth/students. The events will be covered by the local press.
– Online questionnaires to be completed by any citizen so desiring.
C) Contributions from specialized organizations
– Ethical committees from the major research organizations (“CNRS: National Centre for Scientific Research, and “INSERM”: National Institute of Health and Medical Research]
– Faculties and Academies (Sciences, Medicine…) and specialized scholarly groups,
– National Health Conference (a think-tank on basic rights for users) and “CRSA”: Regional Conferences on Health and Autonomy,
– Etc…
Each ethical board or specialized organization will submit its results to the National Consultative Ethics Committee.
There will also be one or more randomly selected citizen panel(s), although the organization and role of the panel has not yet been specified.
II – The phase for the national organizations’ reports: 2nd quarter of 2018
A) Specialized groups
Besides the scientific, ethical and public contributions, evaluation reports of the 2011 Bioethics law will be submitted, which have been elaborated by:
The Parliamentary Office for Scientific and Technological Choices (“OPESCT” (,
The Biomedicine Agency, (“ABM”)
The State Council (responsible for studying ethical and legal issues, as requested by the Government). They will also carry out various consultations.
In addition to these reports, elements will be submitted concerning international comparisons and reflections, carried out by European and international ethical groups, (Council of Europe, European Group on Ethics, etc…).
B) The National Consultative Ethics Committee
This Committee will also conduct auditions to gather opinions especially from concerned parties, scholarly groups and associations.
They will then summarize all these contributions in a summary report, which will be sent to the Parliamentary Office for Scientific and Technological Choices, which includes members of the National Assembly and the Senate, presumably by the end of spring 2018.
A national event is planned to finalize these National Bioethical Conferences on July 7, 2018, the 7th year anniversary date for the law passed in 2011.
III. The phase for drafting the law: 2nd semester of 2018 and 1st semester of 2019
A) The Government Bill
The bill to be drafted requires inter-ministerial coordination, and will begin in parallel with the National Bioethics Conferences.
They will progressively take into account all the local and national contributions, in order to prepare the draft law in coordination with the National Consultations on Bioethics. The stated goal is to finalize the bill by summer 2018, for submission to Parliament in the fall (Source: Health Minister Circular, November 29, 2017).
B) Parliamentary Debate and Voting the Law
To prepare for the parliamentary proceedings, presumably after the bill is tabled, the Parliamentary Office for Scientific and Technological Choices, will evaluate the summary report by the National Consultative Ethics Committee “by highlighting the scientific elements essential to a good understanding of the issues at stake in the proposed reform” (Article L1412-1-1 of the Public Health Code, from the 2011 bioethics law).
Parliamentary procedure generally requires several readings to be held in both assemblies. Thus, according to the government’s provisional calendar, the law is due to be adopted during the first half of 2019.]]>
While the current priority is to evaluate how the 2016 end-of-life law is being implemented, Alliance VITA protests the sudden pressure by some MP’s who are trying to impose the legalization of euthanasia in France. Today a proposal by Caroline Fiat (“Insubordinate France” political party) was examined by the National Assembly, but rejected by the Committee on Social Affairs. Nevertheless on February 1st, it will be debated in a public session.
The Claeys-Leonetti law dated February 2, 2016 is only starting to be recognized and implemented, since the application decrees are only dated from August 2017.
Several official initiatives are ongoing or planned in the short term future, to evaluate whether taking charge of the end-of-life situation is improving in France. The government has launched a survey via the “General Inspection for Social Affairs” (IGAS); Parliament is planning a study group and hearings in the upcoming weeks; the EESC also took up the subject; and medical assessments on the practice of “deep and continuous sedation until death” are in progress via the National Center for Palliative and End-of-Life Care (CNSPFV) and the French Society for Accompaniment and Palliative Care (SFAP).
After barely finishing 3 years of profound and in-depth debate on these end-of-life issues between 2012 and 2016, Alliance VITA views this ideological offensive as threatening to occult the genuine end-of-life issues at hand.
Improving support for people at the end of their lives is the main priority, whether they are in hospitals, nursing homes or at home, especially through pain management, palliative care and intergenerational solidarity. Indeed, in the few foreign countries which have legalized euthanasia, the serious “ethical slippage” observed is a warning for using our utmost caution.
On Monday January 29th, Alliance VITA will be heard by the EESC. VITA remains attentively alert that the National Bioethics Consultations do not serve as a pretext to question the prohibition to kill, which remains the basis for trust between patients and caregivers.
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Alliance VITA was founded in 1993, when the first bioethics laws were at issue, and has been active for 25 years, to heighten awareness that biotechnology should be used to protect the weak, and in respect of human beings’ dignity, especially at certain vulnerable phases of life (embryonic stage, birth, disease, disability, old age or end-of-life).
Its help-lines and listening service SOS End-of-Life, created in 2004, offers support to people with complex dependency needs, those at the end-of-life, their caregivers, their relatives, as well as bereaved individuals.
On January 15, 2018, Arthur Kermalvezen, a 34-year-old French man born by artificial insemination by donor, announced to the press that he had contact with his sperm donor father on Christmas Day, by using a genetic test performed in the US and a genealogical survey.
Having always been aware that he was conceived with artificial insemination by donor, and after years of unsuccessful research, last September Arthur Kermalvezen ordered a DNA test from the American Society of Human Genetics “23andMe”. By ordering a simple salivary test for $ 99 by Internet and using the company’s DNA Relatives program which compares the genomes of other test users, a common origin was identified with a Franco-British man.
This young man indicated which French region he came from, and eventually, Arthur K. found the address of his sperm donor father. “I was 80% sure of my investigation,” says Arthur. “I wrote him a letter telling him my story, but I preferred to ask his neighbors to give it to him since I didn’t know if his entourage was aware of his donation. I introduced myself: my name is Arthur, I’m 34 years old and I’ve always wondered who to thank for allowing me to be born. After having conducted a long investigation “to be able to say thank you” and “ask why he decided to donate” he was contacted on December 25 by his sperm donor father. Arthur conducted this research along with 9 other young adults born from sperm donations, including his wife, Audrey Kermalvezen, a lawyer with a reputation for her legal battles to obtain access to one’s origins.
In France, there are regulations for artificial reproduction techniques. With the first bioethics law passed in 1994, the anonymity of gamete donation was guaranteed. Article 226-28-1 of the Penal Code states “To request testing of someone’s genetic characteristics outside the conditions laid down is punishable bya fine of 3750 €”. But, as Arthur K. says: although the principle of the anonymity of gamete donors may be stipulated by French law, “the reality of having access to one’s origins is a given fact today”.
By making this announcement just prior to the opening of the French National Consultations on Bioethics, Arthur Kermalvezen, former spokesperson for the association Procréation Médicalement Anonyme (Medically anonymous reproduction) and his wife Audrey, also born by artificial insemination from a donor, hope to have an impact on the debates regarding the anonymity of gamete donation.
Jean-René Binet, Law Professor at the University of Rennes and a specialist on bioethics states: “the principle of absolute anonymity is an anomaly which ignores a child’s rights to know his origin. In Europe, several countries like France, that had originally opted for confidentiality have recently renounced “.
Alliance VITA’s General Delegate, Tugdual Derville declares:
“The nature of the debate on abolishing the anonymity for artificial reproduction has changed due to the development of mega-medical databases. The fact that a simple test can identify sperm donors renders the promise of anonymity a serious health and social scandal. Just at the opening of the National Bioethics Consultations, this announcement is a real bombshell. Abolishing anonymity is not only inescapable for the future; it is also retroactive, for past donors, who were deceived. But be forewarned, lifting the anonymity will lead to multiple imbroglios. It will not address the injustice which results from the confusion of ruptured filiations between several men and women for the same child”. ]]>
Human procreation must not be regulated by ultra-liberal nor state-controlled markets. As the National Consultations on Bioethics opens in France, Alliance VITA warns of the risks involved if an ultra-liberal or state-controlled procreation market would be authorized.
Alliance VITA’s General Delegate, Tugdual Derville warns: “This market which threatens the humans has been fostered by industrializing reproduction techniques. Women and men are regarded as a workforce supposed to produce raw materials (such as oocytes, sperm, and uterus) to create babies on demand, and even “customized” babies“.
Alliance VITA is expert on bioethical issues and will remain actively involved throughout the Bioethics Consultations for all the issues currently being debated: (practicing manipulations, or genetic modifications on the human embryo, artificial intelligence, end-of-life, organ donations, eugenics and disabilities).VITA has been granted an official hearing at the French National Consultative Ethics Committee.
Herewith, Alliance VITA is launching 3 initiatives to invite the public to get involved in the debate on these issues:
Organizing a national petition to be sent to the French President, protesting against the rapid expansion of the ultra-liberal procreation market and the emergence of a state-owned industry of human reproduction and human body products.
Dedicating a website throughout this time frame to follow, analyze, and comment on the various stages of the bioethics consultations. Key topics which are too often overlooked in the discussion will be proposed, especially those involving medical causes and treatment for infertility; as well as accepting and giving support to disabled persons.
Inviting individuals who have decided to protect life and human dignity (individuals, couples, and care-givers facing infertility, disability, illness, end-of-life …) to give their testimony for more balance in a debate which is too often monopolized by those with transgressive claims.
Currently a record number of people (7,000) are attending Alliance Vita’s 2018 Bioethics Conferences training sessions [2], which began on Monday January 15th in 140 cities throughout France and abroad. The sessions will continue for 3 successive Monday evenings on January 22nd and 29th, and February 5th.
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[1] Alliance VITA was founded in 1993, during the first bioethics laws, and has been active for the past 25 years to insist on the fact that biotechnology must be employed for protecting those facing life’s hardships, while respecting human dignity, especially in the stages of life where human beings are the most vulnerable (embryonic stage, birth, disease, disability, old age or at the end-of-life).
[2] The public is cordially invited to attend Alliance VITA’s training sessions via the Bioethics Conferences. They are currently being held simultaneously in 120 French cities and 12 countries: Abu Dhabi, Germany, Belgium, United States, Italy, Lebanon, Luxembourg, Mexico, Nigeria, Portugal, United Kingdom, and Switzerland. Alliance VITA proposes a time of reflection on important issues related to the respect of human life and dignity via conferences from experts, philosophers, economists, doctors, and sociologists and from those who are at grass roots operating on VITA’s crisis help-lines and listening services.
In order to fight against human trafficking, surrogacy trade has been banned since October 2016 in Cambodia and January 8th, 2018 was set as the time limit for amnesty.
Surrogate mothers will not be prosecuted if they gave birth and gave the child to the sponsors before January 8, 2018. The latter were urged to report cases to the Cambodian courts in order to obtain child custody and thereby obtain an exit visa through normal administrative channels.
This transition period of amnesty was necessary because the Cambodian women solicited by offers from agents, are often poor, uneducated and live in remote areas.
However as warned by the Interior Minister in July, the embassies have received the legal guideline stipulating that sponsors, surrogates and intermediaries will risk legal prosecution for any children born after the January 8th deadline. According to Cambodian law, the woman who gives birth is the child’s mother. A mother who abandons her own child is considered irresponsible, especially if she is involved in selling her own child. The law stipulates: “any individual who buys, sells, or exchanges another person is punishable for 2-5 years of imprisonment”. The sentence could be increased to up to 15 years if the child is “sold for adoption”, or “up to 20 years if the victim is a minor”.
In Cambodia, surrogacy rates exploded when its neighboring country Thailand banned the practice in 2015 for foreign parents, as did India and Nepal in 2016. Approximately 50 clinics specialized in surrogacy had established trade in Cambodia, although some agencies have since left for Laos following the regulatory announcement, and particularly after the November 2016 arrest of an Australian nurse for her implication.
This nurse who was sentenced to 18 months in prison in Cambodia in August 2017 recently lost her appeal on January 8, 2018, and will remain in prison until summer. She is accused of recruiting surrogate mothers and falsifying documents for birth certificates for newborns; she had also previously worked in Thailand in a clinic specialized in surrogacy.
The Permanence Vice-Chair of the National Committee for Counter Trafficking, Chou Bun Eng, said that a “prakas” (a regulation) would soon be published to specify the penalties for anyone involved in surrogacy, pending a report to be released by the Minister for Women’s Affairs.]]>
In Belgium a disputable case of euthanasia recently made the headlines when a patient, with dementia, was given a lethal injection by his doctor. The physician thus acted in violation of the 2002 Euthanasia Act, without having either the patient’s consent or a second doctor’s opinion.
The Federal Euthanasia Control and Evaluation Commission referred this case, but failed to report it to the State Prosecutor for investigation. One of the commission members, shocked, turned in his resignation in protest. This new infringement provoked fierce reactions in the French-language media in Belgium.
The European Institute of Bioethics has published an analysis which raises questions about how the Commission operates: “The Flemish-language press mentions that some members fear that such cases will damage the reputation of Belgium’s euthanasia law and may even discourage doctors from practicing euthanasia out of fear of being prosecuted. Are political arguments going to prevail above respect of the law? “
==> For the entire analysis]]>
Polls reporting totally opposing viewpoints have been published within the past few months on allowing Assisted Reproductive Technology (ART) donations to be made to single women or same-sex couples.
On January 3, 2018, the IFOP survey question was: “Would you be in favor of artificial insemination (also known as ART) for single women or homosexual female couples who wish to have a child?” The results reported 60% of the French in favor of ART for homosexual women couples and 57% favorable for single women.
In the September 2017 OpinionWay survey, the question was formulated differently: “In your opinion, should the state guarantee children conceived through assisted reproductive technology (ART) the right to have a father and a mother? This poll reported that 72% of the French believe the State must guarantee children born by ART the right to have a father and a mother.
It is obvious that the formulation of the questions greatly influences the answers. In the first question, “the interest of the child is masked” says Tugdual Derville, Alliance VITA’s general delegate. As well as the interest of men who are regarded as if they were only worthwhile for gametes.
The same January 3, 2018 IFOP survey published by “La Croix” shows 64% in favor of surrogacy. In the interest of children and women, heightened awareness is needed urgently in order to stimulate a genuine and reasonable debate, when we know that the surrogate mother system is such a serious transgression of human rights.
This is reminiscent of the considerable differences in end-of-life and euthanasia survey results, which were criticized in an April 2017 broadcast of “Envoyé Spécial” in a lengthy analysis which proved how questions may be biased.
In bioethics, “the reality, however, is more subtle and the questions are always more complicated than they seem at first glance,” emphasizes Jean-René Binet, a law professor, in a editorial entitled “Surveys mustn’t invent laws”.
Will the French National Bioethics Committee be ready to tackle humanitarian issues at their upcoming convention on January 18?
Alliance VITA’s priority is to protect human life and dignity. We are committed to offering our expertise and speaking out for those who are the most vulnerable.]]>
On January 5, 2018, the French State Council ruled in agreement with the Hospital in Nancy, France to stop artificial respiration for 14-year-old Inès, who has been surviving in a vegetative state for over 6 months.
The State Council spokesman stated: “Called to preside over this emergency case, the urgent applications judge ruled that the doctors’ decision meets the legal stipulations, therefore the parents’ appeal was rejected. The child’s attending physician must now decide on the time lapse and whether or not to stop treatment.”
Facts
On June 22, 2017, Inès had a cardiac arrest at home, due to her rare neuromuscular disease: autoimmune myasthenia gravis. The ambulance emergency squad resuscitated her and admitted her to the regional University Hospital in Nancy, where she has remained unconscious but in stable condition since then, via artificial respiration and gastric tube feeding.
Last year, on July 21st, in the collegial procedure provided by the Claeys-Leonetti Act to stop treatment for a patient who is no longer able to speak, the doctor in charge ruled in favor of discontinuing artificial respiration for Inès, esteeming that it was currently a case which could be qualified as unreasonable obstinacy. Nevertheless, they agreed to not enforce the decision against the parents’ will.
On August 3rd, the parents were informed in writing, and they decided to file an appeal with the administrative court urgent applications judge in Nancy on September 11th. Three days later, the judge suspended the previous medical decision and requested a case evaluation, conducted by an expert panel which included two neuro-pediatricians and the department head of pediatric emergencies and resuscitation.
The expert report, submitted on November 17, concluded that Inès was “in a persistent vegetative state” and that she “does not and will never have again the capacity to communicate” with her loved ones.
On December 7th, given the conclusions of the expert report and after hearing the viewpoints from the parents and the hospital’s representative, the Nancy Administrative Court ruled that it would be legitimate to stop respiratory assistance for the young girl. The parents then appealed to the State Council, which met on December 28 for a public hearing to hear the positions of both parties.
The hospital’s viewpoint
In a letter dated August 3rd, the department head of pediatric emergency and resuscitation explains: “The patient’s history, clinical exam, imagery and electroencephalography exams concur with a near-zero possibility of improvement or healing, according to current scientific knowledge.”
During State Council hearing, this same physician expressed how difficult this task was, but also affirmed that he was acting according to his conscience: “It is terrible: I am not only a doctor but a man and a father; it is a painful situation, I see parents on a daily basis, and it’s excruciating to take such a decision. Our only objective is the best interest for the child. (…) and the experts concurred that it would be unreasonable obstinacy to persevere. I can’t foretell the future, but current scientific data do not give any hope for recovery”.
However, the hospital’s lawyer stated, in application of the June 2, 2017 ruling for a “Question of Constitutional Priority” (QCP), according to which a medical decision cannot be implemented prior to giving the family an opportunity for legal appeal: “The parents may still file an appeal with the European Court of Human Rights and the hospital must wait until all possible means of recourse have been exhausted.”
The parents’ opinion
From the beginning Inès’ parents have been opposed to any medical decision to stop the artificial respiration that is keeping their child alive. Their trust in the medical team may have been undermined, due to misunderstandings and lack of psychological support, but the hospital denies this.
When she appeared before the State Council, Inès’ mother stated: “there is no guarantee that she will never regain consciousness. Her father, sister, and brother are also against (stopping treatment), and the parents’ agreement cannot be overridden.” The parents’ lawyer considers that the fact that Inès is a minor introduces a new legal issue. “Can the law override the parents’ wishes while they are the legal representatives for their minor children? In my opinion, this is impossible, unless a judge would decide to terminate their parental rights”.
In its January 5, 2018 ruling the State Council rejected this rebuttal, declaring: “the parents’ agreement is not a prerequisite requirement“. In investigating whether Inès’ case would qualify as unreasonable obstinacy, the judges largely relied on the same factual and legal criteria used for the basis of ruling on Vincent Lambert’s case in June 2014.
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A total control of fertility is illusory“.
France holds the record for one of the world’s highest contraception rates. According to the 2010 Health Barometer, 90.2% of sexually active French women (15-49 years old) admitted using contraception. The percentage was 91.2% among 15-19 year olds, and 92.9% among 20-24 year olds. The 2016 Health Barometer reported that only 8% of women aged 15-49 do not use any method of contraception. Originally presented as a “choice”, gradually becoming standardized, this issue is now being challenged by the third generation of women.
Birth control pills: dissatisfaction and mistrust
The pill has become the most widely used means of contraception. Although thrombotic risks had been reported since 1995, it was only after complaints filed by women with severe thrombotic attacks with these 3rd and 4th generation pills in 2012-2013, that the pill’s reimbursement was cancelled. Consequently there seems to be increasing dissatisfaction with the pill according to the 2016 Health Barometer. While 45% of women took the pill in 2010, reported usage fell to 36.5 % in 2016. Although the majority of adolescent girls (60.4% of 15-19 years old) continue to take the pill, its’ usage is losing ground in other age groups. An article in Le Monde pointed out: “anxiety over taking hormones, refusing to suffer the side effects of migraine, nausea, and/or weight gain, and a greater ecological awareness explain the emergence of this post-pill generation “. The pill has been substituted by IUD’s (25.6%) or by condoms (15.5%), with an increased usage in recent years.
Serious warnings with other contraceptives
On December 7, 2017 the New England Journal of Medicine published results from a Danish study which reported a slightly higher risk of breast cancer among women using hormonal contraceptives (pill, IUD or implants).
In With Mirena, the hormonal IUD, the National Agency for Drug Safety received 2,700 reports of adverse effects between May 15 and August 4, 2017. The Agency concluded that some symptoms were already well-known: “including headaches, depression, hair loss, acne, abdominal pain, decreased libido, hot flashes and weight gain (…). Other adverse effects, which have not previously been recorded, will now be mentioned in the leaflet, including asthenia (physical fatigue, weakening of the body) and seborrhea (excessively oily skin),” according to an article in Le Figaro. At the beginning of 2017, the association Vigilance Hormonal IUD was founded to support victims and denounce the silence regarding the device’s side effects which severely impact some women’s lives.
September 2017, Bayer pulled the Essure sterilization implant off the European market after a heated controversy. The Resist association fought to have the product labeled as being dangerous (debilitating fatigue, ENT symptoms, bleeding, depression …). In France, neither male nor female sterilization is very popular due to its irreversibility, in comparison with other countries. For example in the United States 43% of women have recourse to sterilization, 20% in Spain and 39% in China.
In an article published December 7, 2017, on the medically referenced website “Medisite” the potential consequences of taking the morning-after pill were highlighted. “With a progesterone dose 40 times more than a normal contraceptive pill, the potential side effects are not negligible. For women who have used this emergency contraception, indeed common symptoms include menstrual cycle irregularities, migraines, nausea … But more serious side effects are also reported such cardiac blood clots, especially for women with cardiovascular disease.”
Increasing requests to reconsider excessive medicalization and women’s role in contraception
In its analysis covering the 50 years since contraception was legalized in France, the National Institute for Demographic Studies (“INED”) asks: “Should women be exclusively responsible for contraception, including the undesirable side effects inherent with some methods? Although women have had an advantage of better fertility planning, men’s role in contraception appears to have been completely overlooked, as if they were not concerned, and with few choices available to them. (…) Contraception has become a women’s affair. In conclusion the analysis states: “As we mark the 50th anniversary of the Neuwirth Act, which led to widespread use of contraceptives, there is an increasing request to reconsider excessive medicalization and women’s role.”
This controversy was addressed by journalist Sandrine Debusquat in her book “I Stopped Taking the Pill” published in September 2017. She investigated why women are relinquishing the pill. Her book addresses new perspectives for this generation, which show respect for women’s bodies without automatically relying on chemical contraception. She emphasizes that more natural methods are available which respect the temporal rhythms of the female body, which foster dialogue and give the couple a more balanced responsibility. On September 19, 2017 an article published in Le Monde asks “Why women are abandoning the pill?” To cite a few extracts: Little by little, the truth about “minor” side effects is being revealed. For a long time either masked or endured without discussion, in exchange for sexual freedom and peace of mind, today they are no longer tolerated. Nowadays in 2017, it is considered unacceptable to suffer the nausea, weight gain, mood swings or low libido attributed to taking hormones. “
Misconceptions to be clarified between men and women
Besides challenging the issue of some contraceptive products, it is worth recalling the paradoxical coexistence of a high contraceptive rate as well as a high number of abortions in France: 72% of women who resorted to abortion were on contraception when they became pregnant. There are many reasons for that: forgetting the pill, misuse of condoms, becoming pregnant despite IUD’s…. The same phenomenon is observed in other countries with varying degrees.
In 2016, there were 211,900 abortions in France, compared to 785,000 births. According to INED, it is estimated that 33% of all French women will have an abortion at some point during their lives. According to INED, “The propensity to resort to abortion for unplanned pregnancy appears to have increased although controlling fertility had improved. As the norm of the programmed child gained ground, unplanned pregnancy appeared as a mistake and became increasingly unacceptable.”Can an unexpected child be accepted? This is a recurrent issue, causing conflict for couples, and as often observed by Alliance VITA and its SOS Baby telephone counseling service, with men applying pressure to abort.
This observation led Alliance VITA to launch an informational campaign at the end of 2016 especially for men, to clarify misunderstandings between men and women on issues of sexuality, maternity and paternity, and especially to highlight misconceptions about contraception.
At a time when sustainable development and preserving the planet have become top priorities, women are calling for ecological changes for themselves.]]>
Historically, the Netherlands was the first European country to decriminalize euthanasia and assisted suicide by a law passed in 2001. The number of individuals who have been euthanized has grown steadily every year, constituting a worrisome cultural shift, which is especially troubling for the most vulnerable in society.
This report provides an in-depth review of the current situation, including statistical data, existing laws, and laws currently being debated to broaden its scope. This report examines the main ethical infringements observed, demonstrating an increasingly loose interpretation by the supervisory bodies, to the point that even the United Nations is concerned.
Euthanasia has been legal in the Netherlands for over 15 years, since the April 12, 2001 law was passed, and came into vigor on April 1, 2002. Historically, the Netherlands was the first European country to authorize euthanasia. Since legalization, euthanasia has more than tripled. The figures presented each year by the regional euthanasia review committees also show an increasing number of infringements, and a looser and looser interpretation of the stipulations of the 2001 law.
Even though the precise conditions established by law have not changed “stricto-sensu”, their very extensive interpretation has created increasingly disputable situations. For example euthanasia on people with psychiatric disorders, dementia, those who are very old, or those suffering from several pathologies, has nothing to do with the initially established legal requirements. Other opinions are being voiced, notably by some doctors who deplore that euthanasia has been trivialized.
While some denounce the infringements of the law, others wish to broaden the conditions of access to euthanasia and the practices. Parliament is being pressured to allow assisted suicide for people over age 70 requesting it, with no other motive but their age and “being tired of life”. Thus, the association “By Free Will” (Uit vrije will) organized a citizen’s initiative petition early in 2010, in order to force a Parliamentary debate. A draft bill tabled by the government in October 2016 is currently being studied.
II – STATISTICAL DATA
The data presented below are taken from the annual report of the Regional Review Committees for examining euthanasia (Regionale Toetsingcommissies Euthanasie, RTE). These figures do not include the cases of clandestine euthanasia and palliative sedation which are in fact euthanasias. [1].
In 2002, the first year the law was enforced, there were 1,882 reported cases of euthanasia. By 2012, this number had risen to 4,188; and in 2016 it reached 6,091 cases. In 10 years time, the number of euthanasia cases had doubled, and in 15 years it had tripled. By comparison, the population in the Netherlands only grew by 4% between 2002 and 2016.
In 2016, there were 16 cases of euthanasia per day in this country, for a population of 16.8 million; thus accounting for 4% of all deaths annually.
The majority of these euthanasia cases (83%) were performed on patients suffering from incurable diseases, another 10% for multiple pathologies, 4% for disabilities related to old age, 2% for psychiatric disorders and 1% for dementia.
An abstract of the 2016 report was made and published in French, with the Dutch euthanasia statistics, including tables and the main data used in the analysis. Thus, 80% of the time, euthanasia occurred in the patient’s home and in 85% of cases it was performed by the family physician.
The following chart demonstrates the rise in the number of euthanasia and assisted suicide cases since 2002.
III – THE LEGISLATION
A) The 2001 Law: Legalization of Euthanasia and Assisted Suicide
Euthanasia became legal in the Netherlands with the April 12th 2001 law, entitled the “Law for the Termination of Life on Request and Assisted Suicide”, which became effective on April 1st 2002. It is the result of a long process of debates which began in the 70s-80s, with a more “understanding” vision for doctors, formed by case law, and based on several legislative proposals. (Refer to the annex for the dates in chronological order).
Without decriminalizing euthanasia itself, the current Dutch legislation allows it for some specific cases. Indeed, euthanasia, suggesting or inciting suicide and assisted suicide are still legally considered as criminal offenses. However, the law contains a release from liability clause for doctors who respect five “criteria of due care”:
1) The patient’s request for euthanasia must be voluntary and well-considered. The consent of the patient who is no longer able to express himself may be taken into account if he has previously made a written declaration to that effect, and is at least 16 years old.
2) The patient’s sufferings must be considered unbearable without a prospect of improvement.
3) The patient must be fully informed and aware of his condition, prospects and options.
4) Both the doctor and the patient have reached the conclusion that there is no other reasonable alternative.
5) There must be consultation with at least one other independent doctor who needs to provide written confirmation of the above-mentioned conditions. If the request for euthanasia is made by a mentally ill patient, two independent physicians must have been consulted, including at least one psychiatrist.
The law also applies to minors: it provides that a doctor may accept a minor’s request, if his parents participate in the decision-making (when the minor is between 16 and 18) or give parental consent (when he is between 12 and 15 years old). In addition, since 2005, a protocol known as the “Groningen Protocol” lists the necessary conditions and steps to be followed in the context of end-of-life decisions for young children, especially newborns.
B) Pressures to extend criteria for euthanasia or assisted suicide
On a regular basis, a number of organizations campaign for a broader interpretation of the 2001 law. For example, in 2011 the Royal Dutch Medical Association (hereafter KNMG, the acronym for the association in Dutch :Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst) proposed new guidelines to clarify what is allowed or not, within the legal framework, considering that the suffering in non-terminal phases of a disease could be a motivation for requesting euthanasia [1].
However in public debates or legislative proposals, the strongest pressure is targeted at extending legal possibilities for new situations, which were not originally imagined.
1 People who are “tired of living“
In October 2016, the Dutch government tabled a draft bill intended to allow for new legal guidelines for the assisted suicide of the elderly [2], even if they are not suffering, pleading that they have “fulfilled or completed their life” voltooid leven). The guiding principle would not be to relieve suffering, but to respect the individual’s autonomy. According to the government, these individuals “no longer see any possible way to give value and meaning to their lives, have difficulty bearing their loss of independence, and feel lonely”.
However, in February 2016, a commission mainly composed of doctors, philosophers and lawyers, concluded that the notion of “accomplished life” could not be recognized. These experts consider that the 2002 law is already wide enough, and foremost it could pave the way to euthanasia under the influence of some families wishing to “finish off” elderly and vulnerable relatives. Some political parties agree that this is worrisome, believing that such a text would only put “pressure on other elderly people and make them feel burdensome to the community“. A medical ethics professor considers the government’s initiative as “proof of our failure to truly offer the elderly a place in society.” [3] In a statement on March 2017, the KNMG also confirmed: “Such a radical proposal is undesirable for both practical and principled reasons” [4].
Both the Minister of Health and the Minister of Justice decided to ignore this important opinion and are pushing for the bill to be passed. Further clarification is needed, especially regarding the age at which euthanasia would be possible: the ages 70 or 75 are often mentioned. Instead of a doctor, these requests would then be handled by a social worker specially trained in assisted death, and by an independent expert.
2 Euthanasia for minors under 12
The current Dutch law allows euthanasia of children from the age of 12. During the period between 2002 and 2015, 7 cases were declared. The 2005 Groningen Protocol regulates euthanasia for newborns who are severely ill and whose “quality of life” is deemed unsatisfactory [5].
As of 2014, the Ethics and Law Commission, of the NVK (Nederlandse Vereniging voor Kindergeneeskunde – Dutch Pediatric Association), suggested having discussions on allowing euthanasia for children under 12 years of age (the decision would be made by both parents and the doctor, without necessarily having the child’s agreement) [6]. As early as 2015, the NVK declared it was in favor of euthanasia of children between the ages of 1 and 12, based on an analysis of the ability to discern [7]. In cases where the children cannot understand nor speak for themselves, the doctor, with both parents’ consent, could choose euthanasia, as it is already the case for newborns.
In May 2016, the Minister of Health declared that passing a new law was unnecessary for extending these practices: “It is a mistake to believe that the current legal guidelines do not allow death for seriously ill children. Indeed, a doctor in case of “absolute necessity” can always invoke the condition of necessity. “
3 The development of organ donation after euthanasia
In 2012, after the first organ removal, the practice is being developed to help overcome the shortage of available organs. In March 2016, an emblematic case was highly publicized with the euthanasia case of a man “who saved five lives”.
In early 2017, guidelines for organ donation following euthanasia (Richtijn orgaandonatie na euthanasia) were written, at the request of the Minister of Health, health professionals, patient associations, ethicists and patients’ relatives. This multidisciplinary and practical guide (Richtijn orgaandonatie na euthanasie) was made to provide detailed information on the medical procedure combining euthanasia and organ donation. These directives, applicable to all doctors and hospitals, specifically insist that euthanasia must be performed in a hospital and not in the patient’s home by the attending physician as is usual in most cases. This allows organ removal at the hospital in the minutes following expiration, with an appointed professional team waiting in the operating room.
Beyond medical technological issues, are many genuine ethical questions still to be addressed. The clearly stated objective is that thanks to these new guidelines, organ removal from persons who have died of euthanasia is facilitated and the number of post-mortem organs available in the Netherlands should be doubled. Nevertheless it is worrisome that medical or societal pressure to obtain organs might incite individuals to “sacrifice themselves” by a misconceived idea of charity between sick and healthy people.
4 The suicide pill
In September 2017, the association “De Laatste Will” (The Last Will) announced it would provide a product to provoke death within an hour without a doctor’s supervision. With 3,500 members and an average age of 70 years old, this association advocates “the right to die with dignity” when the person has made his decision, and not necessarily in cases of unbearable suffering.
IV – A LARGE NUMBER OF INFRINGEMENTS RECORDED
Although the law has not formally been changed since 2001, its’ interpretation has become increasingly permissive. Even if the law provides for relatively strict conditions, in practice the interpretation has been extended, thus making euthanasia more accessible.
A) Euthanasia, instead of palliative care
1 The law on euthanasia was passed “far too soon”
In December 2009, Mrs. Els Borst, the Dutch Health Minister in 2001, responsible for legalizing euthanasia, confessed to Anne-MeiThe, anthropologist and jurist, in a book of interviews that: in her opinion, euthanasia was legalized “far too soon”. She believes that public authorities did not focus the necessary attention on palliative care and accompanying the dying. “In the Netherlands, we first listened to the political and public requests for euthanasia. Obviously, this was not done in the correct order. In particular, she questions the “public pressure” from doctors seeking to relieve their patients’ suffering without having to carry out extraneous illegal “tinkering”.
2 Inappropriate sedation and disguised euthanasia
In 2013, the Dutch Cancer Center (NKNL) denounced disguised euthanasia and inappropriate patient care. Every year, 1700 cases of end-of-life sedation could be the result of concealed euthanasia practices.
Published in July 2017, the 3rd Five-Year Evaluation Report (2012-2016) of the Dutch Law, studying death certificates demonstrated that deaths by “deep and continuous sedation until death” had risen by 8.2% in 2005 to 18% in 2015. This sharp rise highlights the need to better understand whether this technique is palliative care or practice of euthanasia.
Moreover, published on August 26th, 2016 a study carried out by “SCEN” doctors (Steun in Consultancy bij Euthanasia in Nederland), maintains that many cases are practiced because the individual requesting euthanasia did not receive adequate care.
B) People with psychiatric disorders
The law explicitly states that the patient’s request must be voluntary and well-considered. Therefore it is problematic to grant euthanasia to patients with psychiatric disorders or dementia. For such an irreversible decision as euthanasia, the question that free choice raises is applicable until the last moment. For patients with mental health problems, expressing free will is even more difficult to establish. Yet euthanasia in these situations is not uncommon. Referring to an advance directive (a written document requesting euthanasia in cases where the person can no longer give informed consent) is commonplace for justifying euthanasia in cases of dementia.
In 2009, the Regional Review Committee reported 12 cases of euthanasia for neurological diseases, including people at the early stages of Alzheimer’s disease. In 2016, according to the data, 201 euthanasia cases were reported for psychiatric illnesses (60 cases) and dementia (141 cases). The ability of a psychologically impaired person to consent is difficult to establish, and thus many doctors refuse euthanasia for these patients. The question of “suffering without any prospect of improvement” could also be evoked in some psychiatric cases.
On February 16, 2017, a petition signed by 350 doctors denounced euthanasia of individuals with dementia, and the increase in “borderline cases”. “How can one give a lethal injection to a patient with advanced dementia, simply on the basis of an advance directive? How can one give a lethal injection to someone who is not able to confirm that he wants to die? We refuse to do it. Our moral reluctance to end a helpless human being is too great. “
C) The End-of-Life Clinic: a means to circumvent doctors’ refusals
Although the law explicitly stipulates that the doctor and the patient must both concur that no other solution is available; some associations consider that the patient’s wishes should always prevail, and that a doctor’s refusal should not prevent euthanasia from occurring.
In 2012, the association “NVVE” (association for the voluntary end-of-life) has set up “travelling teams” to cater to people whose family practitioners’ refuse euthanasia. Composed of a doctor and a nurse, there are 30 travelling teams. The association intends to perform 1000 euthanasia per year, and has also opened a “death clinic” in The Hague, specializing in euthanasia.
According to the official report from the Regional Review Committees for euthanasia in 2016, doctors at the End-Of-Life clinic performed approximately 400 cases of euthanasia, compared with 107 in 2013. They willingly accept the most borderline and “complicated” cases which other doctors do not necessarily believe to be justifiable, and yet this clinic appears oblivious of being reprehended by the oversight review committee or by the justice (see below).
The KNMG association comprising 53,000 doctors denounces these “travelling teams” who don’t know the patients well enough to be able to judge their condition: “We are not against euthanasia if there is no other alternative. But euthanasia is a complex process, following long-term treatment and based on a relationship of trust with the patient. We must have a holistic approach to the patient’s treatment especially to evaluate if there is an alternative to euthanasia: we seriously doubt that this can be done by a doctor whose only objective is to perform euthanasia. “
V – LAXISM OF OVERSIGHT BODIES
Although the law has not formally been modified since 2001, its interpretation has given way to various practices.
A) The Regional Review Committees have a broad interpretation of the law
Five Regional Review Committees were established in 2002 to evaluate the euthanasia cases and verify that physicians act in accordance with criteria of due care. They report annually on euthanasia in their respective provinces.
As early as 2008, an official report in French cited the annually increasing rates of euthanasia. Nevertheless, the percentage of clandestine euthanasia was still estimated at 20% in 2005, which raises the question of full legal disclosure. The report also stated that “no criminal proceedings were brought against a doctor on the basis of articles 293 (euthanasia) and 294 (assisted suicide assistance) of the penal code. In 6 years time, a total of 24 contentious cases were reported by the Regional Review Committees to the College of Public Prosecutors. In most cases, the doctors in question were invited to speak with the Queen’s Procurator for a simple call to order, since apparently the prosecution had not received two legal violations by the same doctor “.
In 2016, these Review Committees only requested additional information for 77 out of 6 091 cases, or 1.3% of the total number. Of these 77 cases, euthanasia was carried out in 10 cases, even though the doctors did not meet the required conditions.
In July 2017, the following overall statistics were published for the Dutch Law in the Third 5-Year Evaluation Report (2012-2016):
Only 0.2% of the cases reported to the Review Committee board were found to be non-compliant with the criteria of due care defined in the law (76 cases out of the 43,171 cases reported between 2002 and 2015).
The Review Committee only requested clarification from the doctor in 4% of the reported cases.
In 1% of the declared cases, doctors were summoned to a committee meeting to clarify the case.
This report concludes: “When the doctor acts in a way that does not comply with the criteria of due care, but apparently acts in good conscience, the committee prefers an informational discourse towards him rather than prosecution.”
B) According to the Law, no abuses have occurred since 2001
There have been particularly wide-ranging judicial decisions. For example in the case of Albert Heringa, there was acquittal after appeal, even though he assisted his mother to commit suicide under illegal conditions. This controversial decision was rendered “on the grounds that he acted in an “emergency situation”, having to choose between respecting the law or an “unwritten moral obligation” to procure lethal products for his mother’s suicide.”
On three occasions in 2014, the End-Of-Life clinic was accused by the Regional Review Committees for irregularities in their requests files. Nevertheless this clinic continued unabashedly to develop its activity. In 2015, two cases of euthanasia were deemed non-compliant with the legal requirements. In spite of this, the End-Of-Life clinic, responsible for the procedures, did not face any criminal charges.
Several other controversial cases have been highly publicized. For example, in 2016, a 41-year-old alcoholic was euthanized at his request. A 20-year-old woman, sexually abused several times during childhood, and suffering from psychological sequelae, was also euthanized. Her doctors concluded that her physical and mental suffering had become unbearable. In February 2017, a woman suffering from Alzheimer’s disease was euthanized against her will in a health care facility. Subsequently the control committee referred the case to the court for violation of the law by a doctor (for the first time in 16 years), but without filing for homicide.
VI – UNEASINESS FROM MEDICAL STAFF
A) Lack of an objection of conscience clause for doctors
In the Netherlands, there is no formal objection of conscience clause for physicians, thus they cannot refuse euthanasia on personal, moral or ethical grounds. In 2011, the KNGM (Royal Dutch Medical Association) instituted guidelines, to specify the conditions for practicing euthanasia, and included the physician in the decision-making process for some operations.
In its concluding recommendations, the 3rd Five-Year Evaluation Report (2012-2016) of the Dutch law nevertheless emphasizes that “the government should reaffirm the fact that doctors are not required to grant requests for euthanasia. The report also gave the following suggestion: “Abandon the legal stipulation of requiring referral to a colleague for cases where doctors refuse a request for euthanasia or assisted suicide (Conscience Clause).”
For palliative sedation, it is normally the doctor who makes the decision, with the patient’s agreement. However, in March 2017, a Dutch doctor, specialized in geriatrics, was sentenced by the Health Disciplinary Board of The Hague. He had refused to sedate his patient, considering that she was calm, slept well, and reacted well to doses of morphine, without having any refractory adverse effects. The Council judged that the doctor should have taken into account the psychic suffering of still being alive, and that the mere fact of wanting to die could be qualified as a refractory adverse effect.
B) Strong psychological pressure on doctors
Prominent figures such as Professor Theo Boer have denounced the slippery slope towards trivialization and a loss of control for euthanasia, which is tending to become the standard way of dying for cancer patients.
In 2015, the KNMG carried out a survey to poll 500 doctors on their opinions on euthanasia. The doctors denounced that the act was being trivialized, and lamented that increasing numbers of patients wished to resort to euthanasia instead of a natural death. The survey showed that 60% felt “pressured into euthanasia by their patients or by the family” and 90% felt that the burden put on doctors to perform euthanasia is underestimated.
The doctors’ petition regarding individuals with dementia also underlines that euthanasia is a complicated issue for doctors (see § IV-B).
VII – CRITICISMS FROM OUTSIDE THE NETHERLANDS
A) A vague law for French parliamentarians
French parliamentarians studied the Dutch law in 2008, during an in-depth study tour. In their analysis they reported that the law’s application has several questionable characteristics:“the criteria to assess the degree of a patient’s suffering are unclear; the very existence of a posteriori verification based more on respecting the procedure than for medical reasons; the doctor’s assessment is subjective and the lack of knowledge of the law is not sanctioned. It is paradoxical to insistently voice a person’s right to autonomy, and yet confide the decision to the doctor, thereby de facto submitting this legislation to medical authority.
B) Apprehension from the UN Human Rights Committee
In July 2009, the UN Human Rights Committee expressed apprehension about the high number of cases of euthanasia and assisted suicide. The Netherlands were “strongly urged” to revise the law in order to comply with the provisions in the 1966 International Covenant on Civil and Political Rights.
Despite these criticisms, the legislation in the Netherlands has not been modified. The number of euthanasia cases continues to grow every year, with an increasingly extensive interpretation of the law and growing pressure from some to expand its scope even further.
In particular two topics were mentioned:
The significant number of cases euthanasia and assisted suicide, and their annual progression.
Some modalities raised questions: allowing a doctor to terminate a patient’s life without seeking a judge’s opinion, and the fact that the second medical opinion required by law is obtainable via an emergency phone line.
ANNEX
Changes in the legal framework before the 2001 law
1973: In the first judicial decision where the law was transgressed, the doctor was only sentenced with a symbolic penalty for practicing euthanasia on his mother. Other similar judgments followed.
November 27, 1984: The Dutch Supreme Court introduced the aspect of “force majeure” into case law, which a doctor may invoke when he has resorted to euthanasia, but has acted conscientiously and with due respect of medical ethics.
1988: Bill to amend the Penal Code to decriminalize euthanasia and assisted suicide, resulting in 1989 with an agreement that a national inquiry commission be created.
November 1, 1990: A procedure is established to regulate doctors’ reports of euthanasia.
November 8, 1991: the government proposed that the Dutch Parliament decriminalize euthanasia “de facto” (and not “by law”). Thus, it was not an issue of legalizing euthanasia, but one of legalizing the possibility to declare death by euthanasia. Implicitly, the bill recognized euthanasia as a legitimate medical procedure in some situations.
February 9, 1993: Parliament accepted the bill and it came into force.
Late 90s: Parliamentary debates were held to “legally” decriminalize euthanasia and assisted suicide, culminating in the law of April 12, 2001.
An important meeting of the UN Human Rights Committee was held at the beginning of November 2017 in Geneva. The experts’ discussion was centered on a report which intends to interpret the fundamental right to life to include facilitating access to abortion and euthanasia (or assisted suicide) by all Member States.
This committee of experts is a supervisory body set up after the “International Covenant on Civil and Political Rights”, adopted by the UN in 1966 and has now been signed by the majority of the countries in the world. This Covenant is one of the international treaties established to enhance the legally binding force for the principles set out in the famous 1948 Universal Declaration of Human Rights.
The Human Rights Committee, made up of 18 independent experts, plays an important role in interpreting the Covenant and monitoring how it is implemented by States. This gives it increasing authority over jurisdictions and legislators around the world.
However, for the past several months, this Human Rights Committee has been reviewing the manner in which Article 6 of the Covenant should be interpreted in the future regarding the respect of the right to life. To give a new official and universal interpretation to the “right to life”, some of its members want to introduce a “right to die” by forcing States to legalize and/or encourage both abortion and euthanasia – or assisted suicide – (see the report entitled General CommentNo. 36, at § 9 and 10).
Of the 18 experts on the committee, only 6 spoke at the meeting in early November, with 5 of them pronouncing in favor of abortion (1). For example the Tunisian representative, Professor Ben Achour (see video), who claims to defend disabled people once they are born (“Society must do everything possible to protect the disabled, to assist them […] after birth “), but he is in favor of aborting any fetus with a disability (” But that does not mean that we have to agree to leave a fetus alive who has a handicap […] We can avoid handicaps and we must do everything to avoid them’).
The French expert, Mr. de Frouville, international law professor law at the Panthéon-Assas University, also recommended avoiding any “philosophical or theoretical aspects” by focusing exclusively on women’s rights. Citing the International Family Planning arguments whereby abortion should be decriminalized and made “safe, legal and affordable”, he asserted that this “is at the heart of the right to life issue”.
The general public is unaware of what is happening in this committee of experts. In principle it is a consultative body, but it has real power over all the countries of the world, thus posing several major ethical questions.
In particular, this raises the problem of how these experts are appointed, and whether they represent their personal viewpoint or that of their country. As the “country of human rights”, this appointment is important in France both symbolically and practically, and thus deserves a genuine public debate.
Beyond the committee’s composition, if the draft in question is adopted in its current form, the “right to life” would become devoid of substance for millions of human beings. This complete paradox would constitute a serious misuse of the spirit of the 1966 Treaty.
The next meeting of the Human Rights Committee is scheduled for March 2018 with the intention of adopting General Comment No. 36.
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These discussions in Geneva were reported by the European Center for Law and Justice (ECLJ), which posted an on-line petition and published a dissertation denouncing this dangerous development.]]>
While the Australian state of Victoria is debating on the Victorian Voluntary Assisted Dying Bill, the World Medical Association (WMA) is urging the MP’s in the Upper House to reject it.
Consistent with their long-standing position statement, the WMA declares that: “Physician assisted suicide, as well as euthanasia, is unethical and must be condemned by the medical profession. The assistance of a physician, intentionally and deliberately directed at enabling an individual to end his or her own life, is unethical.”
It strongly encourages “all national medical associations and physicians to refrain from participating in euthanasia, even if national law allows it or decriminalizes it under certain conditions”.
Although at the national level, Australia has repeatedly rejected attempts at legalization, the bill currently debated in Victoria is particularly wide. It consists in providing lethal doses that the patient could self-administer, without requiring any surveillance whatsoever: no witnesses, not even a physician’s presence is required. These provisions could apply to individuals with an estimated 12-month life expectancy. If a patient is unable to administer the lethal dose by himself, a physician’s assistance could be sought…]]>
This young actor and athlete with Down syndrome appeared before the US Congress at the end of October. He requested research funding for this chromosomal disease, rather than abort fetuses diagnosed before birth with Down syndrome.
French Television station BFM aired an extract of his powerfully moving and poignant speech before Congress. “I am a man with Down syndrome and my life is worth living”
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“Dignity is inherent to human beings, not to machines or robots. Therefore, robots and humans are not to be confused even if an android robot has the seductive appearance of a human, or if a powerful cognitive robot has learning capacity that exceeds individual human cognition. Robots are not humans; they are the result of human creativity and they still need a technical support system and maintenance in order to be effective and efficient tools or mediators.”
“The ‘do not harm’ principle is a red line for robots. As many technologies, a robot has the potentiality for ‘dual-use’. Robots are usually designed for good and useful purposes (to diminish harmfulness of work, for example), to help human beings, not to harm or kill them(…) If we are morally serious about this ethical principle, then we have to ask ourselves whether armed drones and autonomous weapons should be banned.” “Deterministic robots, and even sophisticated cognitive robots, cannot take any ethical responsibility, which lies with the designer, manufacturer, seller, user and the State. Therefore, human beings should always be in the loop and find ways to control robots by different means (e.g. traceability, off-switch, etc) in order to maintain human moral and legal responsibility.”
This approach correlates with recommendations being currently drafted by European and national authorities, specifying that robots should not be independent of human control nor allowed to direct changes in human labor.]]>
On the 20th anniversary of the Convention on Human Rights and Biomedicine(Oviedo Convention), the Bioethics Committee (DH-BIO) of the Council of Europe held an international conference on October 24-25, 2017 on its relevance and challenges.
This international convention is the only legally binding international instrument to “protect Human Rights and the dignity of human beings with regard to the application of biology and medicine“. This reference text uses the principles of human rights; applying them to medicine for the protection of Human Rights. Signed on April 4, 1997, the convention became effective in December 1999. It has been ratified by 29 member states of the Council of Europe.
The text prohibits creating human embryos for research purposes, while allowing national legislation to rule on the issue of embryo research.
Furthermore, Article 13 states that any intervention seeking to modify the human genome cannot be undertaken if it modifies the genome of descendants.
Based on these principles, on October 12th the Parliamentary Assembly of the Council of Europe voted a recommendation to reaffirm the ban on inducing pregnancies from embryos or from genetically-modified gametes, and to establish common rules for the 47 member states of the Council of Europe.
The British representative of the DH-BIO protested that the Convention was too rigid, and asked for changes regarding modifications on the human genome. These remarks were followed by considerable controversy, especially since the United Kingdom has not yet ratified the Convention. The tension could be felt between those who value human dignity and those pushing for unbounded research.
Several speakers called for a straightforward public debate to restore confidence in medicine. Taking ethical and human rights values into account does not hinder, but rather encourages a science with conscience.]]>
On Thursday October 19, 2017, Alliance VITA addressed the issue of Advance Directives. “ANTICIPATE, before dying” to provide information and raise public awareness with opinion polls and street surveys.
Polling
The IFOP poll showed that 86% of French citizens had not yet signed their advance directives, despite the February 2, 2016 law for this subject, and the informational campaign carried out by public authorities in coordination with the National Palliative and End-of-Life Care Center.
42% declare being unaware that these measures exist.
For those who are aware of advance directives, the other reasons mentioned for not signing include:
16% don’t want to think about the end of their life;
13% don’t think they should decide ahead for their end-of-life conditions;
8% are in favor of this, but find the files too complicated.
Alliance VITA notes that 21%, who are aware but haven’t signed their advance directive forms, attest they haven’t found a suitable response among the prerogatives proposed.
Is it preferable to wait and entrust the decision to caregivers and loved ones?
The appreciation differences for those over 65
The public who is the most concerned is the over 65 year-old age group with the following results:
34% are unaware of advance directives vs. 42% for all ages
21% are reluctant to decide in advance vs. 13% for all ages
12% consider it “complicated” vs. 8% for all ages
The reality is that it be complicated to predict one’s choice ahead of time.
The street survey poll included the question: “What would you like to do before you die?”
In the past, Alliance Vita received national acclaim its’ survey: “Let’s Speak of Death” with 1000 quotes broadcast via the social networks, and local exhibitions with an explanatory guide. Now more than 1,000 Alliance VITA volunteers in 100’s of cities are polling pedestrians: “What would you like to do before you die?”
Alliance VITA’s website has published a video which filmed the public’s reactions to the pilot teams. Often, this question leads to fundamental discussions about life’s meaning. Their first conclusions:
the priority given to one’s relationships with families and friends
the importance of accomplishments (travels, descendants) and giving meaning to everyday life
the basic conviction of expressing love, by tenderness or spirituality.
The initial results are gathered together for each town at their local centers.
Asking such a question give individuals an opportunity to reflect and share the meaning of one’s life. As Hannah Arendt affirmed “Mortality is the sign that we are human.” Indeed, since the subject of death is practically taboo in our society, having “brotherly” exchanges between fellow mortals may paradoxically lead to becoming more humane.
Guides on Advance Directives distributed during the informational campaign
Stands staffed by Alliance VITA volunteers in almost 100 cities are offering a new VITA Guide to each person surveyed.
This simple, pedagogical tool is suitable for all individuals whether they are healthy or sick. It is a guide to promote relationships between caregivers and patients.
Alliance VITA will continue to distribute the Guides. The downloadable version is available through its site which is focused on listening and accompanying those at the end-of-life: www.sosfindevie.org.
On October 12, 2017, the Parliamentary Assembly of the Council of Europe (PACE) adopted a recommendation regarding the use of new genetic technologies in human beings, calling on the 47 member States to forbidestablishing pregnanciesfrom gametes or human embryos which have been genetically modified.
Headed by Belgian Senator Petra De Sutter, this recommendation appears at a time when the scientific community, as well as many countries, is very concerned about using genome editing tools – especially the CRISPR-Cas9 technique – if it involves modifying the human embryo or germlines.
The ethical stakes of such a commodification of human beings at the very beginning of life are vertiginous, and any germline editing carried out would be transmissible to the following generations. To sound an alert, Alliance VITA published a comprehensive report last May to shed light on thechallenges involved in modifying the human genome with respect of Human Rights and the work carried out by PACE.
According to the Belgian Senator, the scientific consensus is adhering to a de facto moratorium, but this remains to be firmly grounded. The draft report summary declares: “Deliberate germline editing in human beings would cross a line viewed as ethically inviolable.” The recommendation cites that “other techniques, such as pronuclear transfer technology (“3-parent” IVF technique) which is used to avoid maternal inheritance of mitochondrial disease transmission, have been used and resulted in several babies being born (for reasons other than the treatment of mitochondrial disease), despite considerable ethical controversy and scientific uncertainty about the long-term effects.”
The position affirmed by the Council of Europe is crucial since numerous scientific and ethical bodies are starting to make recommendations. It is based on the International Convention on Human Rights and Biomedicine (“Oviedo Convention”) which will be marking its 20-year anniversary in a few days. Regarding genetic modification, Article 13 posits that “An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modifications in the genome of any descendants.”
Many Council of Europe member States and all of those in the European Union forbid procedures for human genome editing. The text “urges member States which have not yet ratified the Oviedo Convention to do so without further delay, or as a minimum, to put in place a national ban on establishing pregnancies with germinal cells or human embryos having undergone intentional genome editing.”
Nevertheless, for Alliance VITA, this recommendation does not address some serious uncertain issues. It does not recommend a ban on performing research on embryos and germlines, even though this is a highly controversial issue from both ethical and human standpoints. It also calls for a broader public debate, thus attentive vigilance is warranted.
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For more information on these issues: Audition by ’OPCEST; Blanche Streb – Alliance VITA]]>
On October 11, 2017, French Council of State rejected Dr. Nicolas Bonnemaison’s appeal against the decision of the Order of Physicians to maintain the revocation of his license to practice medicine. In April 2014 he was removed from the Order after being accused of being involved in the death of 7 patients in the Bayonne hospital between 2010 and 2011.
This is the final ruling for the professional proceedings initiated by the Order of Physicians. Previously, criminal procedures were carried out in the judicial court system, with two trials held in assizes (the first in Pau, in June 2014, whereby Dr. Bonnemaison was acquitted, and the second in Angers in October 2015, where he received a 2-year suspended sentence).
The professional procedure began in January 2013, when he was removed from the Order of Physicians on a regional level. Bonnemaison then appealed but the Disciplinary Chamber of the Order confirmed the April 2014 decision forbidding him to practice medicine, which became effective on July 1, 2014. Then an appeal was filed with the Council of State, which is the highest ruling authority for cassation cases when the ruling concerns a professional order. In December 2014, the appeal was dismissed by the Council of State judges.
At the end of 2015, following his acquittal for 6 of the 7 suspected deaths at second criminal trial in Angers, Dr. Bonnemaison requested to be reinstated to practice medicine throughout France. In June 2016, this request was rejected, with the Order stating that “Acting on his own initiative, Dr. Bonnemaison deliberately caused the death of at least 2 of his patients.” For the Order of Physicians, revoking his license “does not appear to be excessively severe, regardless of whatever humanity grounds he invoked to justify these acts”.
A new appeal was filed to contest the latter decision; however the Council of State has again upheld the prior ruling.
Following the public rapporteur’s recommendations issued on September 13, the Council of State’s judges initially ruled that the Disciplinary Chamber of the Order had “not committed any legal error” since it is not bound by the Anger’s Assize Court ruling of partial acquittal.
Afterwards, the penalty was verified to be proportional with the accusations. They ruled that since the Health Code law “forbids deliberately causing death” the gravity of Bonnemaison’s acts justified his dismissal.
Nevertheless, the eventuality of a new professional procedure is not yet completely ruled out. As pointed out by the Disciplinary Chamber in its June 2016 decision, at the end of the initial 3-year time limit set by the law, Bonnemaison may request for the sanction to be lifted, meaning July 1, 2017.
For a few months in 2017, Dr. Bonnemaison was re-employed by the Bayonne Hospital, on a fixed-term contract and without patient contact, to perform clinical research on medical protocols, such as oncology.]]>
No one can remain indifferent following the incident of Anne Bert’s highly publicized euthanasia. Anyone suffering from severe disabling pathologies deserves to be heard, comforted, and supported. While being sympathetic to Anne Bert’s suffering, it does not entitle her to be a spokesperson for other patients, their relatives and all those professionals and volunteers who take care of them.
The French public was caught unaware by the mass media’s no-holds-barred coverage of Bert’s personal suffering, even announcing that her book’s release would follow her planned suicide in Belgium. Without judging the person, in hind-sight we must try to understand the fatal consequence of her act. In view of all the publicity, was she still acting under her own free will? Could she desist without incurring consequences from those who used Anne Bert’s situation to further their cause, without mentioning her publisher’s disappointment?
This suicide’s impact on patients, families, and caregivers needs to be addressed. To speak of having the “courage to die” in such a situation, is completely obliterating the courage it takes to live. It is desperately critical when vulnerable people hear that it’s better for them to choose death, rather than life, to choose euthanasia over palliative care and research. Every individual needs to be taken into account and supported during the difficult loss of autonomy. If the media only give voice to a person who does not accept dependence, no one will hear the edifying testimonials of those who assume their difficulties…, thus demonstrating how society excludes those who are vulnerable.
Some speak of having to seek exile in Belgium. What is shocking however, are not the differences in terms of death, but those in terms of life: accompanying, supporting, and giving people access to palliative care. Are we going to do our best to relieve physical pain and moral, social and spiritual suffering when facing the natural end of life and implement the necessary resources? Or are we going to take the easy path by “extinguishing” people?
Forbidding killing is society’s red line which must not be crossed. At stake is the challenge of refusing both therapeutic eagerness and euthanasia. France has made this decision in favor of humanity. Acting otherwise would risk hindering medical research’s huge efforts to combat illness- especially the one this woman suffered from- and to fight against pain.
The treatment of most vulnerable individuals in society reveals much about our humanity. It is inacceptable to judge people according to their supposed usefulness. The way we look at them often influences the way they see themselves.
If society deems that euthanasia is required for anyone who is seriously ill, we will become dehumanized. This latest media coverage should incite a leap of conscience, without ceding to the influence of those who are taking advantage of the situation, trying to force the government to relent in favor of euthanasia and assisted suicide. ”
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Listen to Tugdual Derville and the complete debate on Assisted Suicide recorded by Sud Radio on September 12, 2017.]]>
On October 5th, French Health Minister, Agnès Buzyn, met with Jean-François Delfraissy, the new chairman of the ‘CCNE’ (National Consultative Ethics Committee) to reflect on the timetable for revising the bioethics law planned for 2018.
The current version of the bioethics law was voted on July 7, 2011.
It was voted that the law could be revised after 7 years.
Last September 13th, Mr. Delfraissy unveiled the major steps ahead concerning the law’s revision. The General Assembly is scheduled for the first half of 2018, followed by a bill in the autumn, in order to adopt a new legislative text by the beginning of 2019. From January 2018 onwards, major regional public debates are planned throughout France, organized by the local ethical departments of the Regional Health Agencies. A “citizen’s panel” may also be held to discuss the issues. Mr. Delfraissy intends to convene jurists and scientists, as well as representatives from various religions and associations. More specific details are expected following the meeting between the Health Minister and the Ethics Committee chairman.
Some worry that the debate will focus on extending the law to allow “medically assisted procreation” for female couples and single women. But many additional issues were not addressed in 2011, such as human genetic modifications with the CRISPR-Case9 technique, the use of “Big Data” for medicine or for artificial intelligence, and in a more general manner, transhumanism.]]>
On September 28, 2017, the association “LittleBrothers of the Poor” has just published an unprecedented study entitled « Over 60: Isolated and Lonely in France in 2017” The opinion survey was carried out last June by the CSA Institute (Consumer Science and Analytics). Over 1,800 individuals were interviewed either by telephone or in person, including those in nursing homes, hospitals or prisons.
Founded in 1946, the Little Brothers of the Poor is committed to relieving isolation and loneliness. Over 12,000 elderly French people are visited at least weekly by the association’s 11,500 volunteers.
This survey established three conclusions:
300,000 French who are over 60 have « no social life »: meaning they almost never, or only rarely visit with others – whether it be members of family or associations, or in social or neighborhood circles. Moreover, just because the elderly in nursing homes are surrounded by attentive caregivers, this does not exclude them from experiencing feelings of loneliness. Poverty exacerbates the risk of being isolated, as well as living in the countryside or far from a large city.
“Digital exclusion” or unconnected to Internet: By age group, 31% of those over 60 have never used Internet, increasing to 47% for those over 75 years old, and reaching 68% for those over 85. The various reasons include the lack of connection, or training, but also the means to subscribe. Thus, today when Internet is used for an increasing number of formalities (administrative or otherwise), the elderly have a complete disadvantage. Nevertheless, since smart phones and tablets are easier to use than computers, some communicate with friends and family, with audio and video options, in spite of geographical distances.
Age 85: new threshold for old age. Starting at this age, the elderly are noticeably less autonomous. They have fewer contacts, they go out less often, but nevertheless it is also the period where their children visit them more frequently: at least once a week for 62% of those parents who are 80 and over.
This study also observed that a large majority of those surveyed prefer to remain in their own homes (only 3% preferred nursing homes with medical care). One notable fact was that 88% of those over 60 declare they are happy, (compared to 82% of those over 18 years old.) The associative network plays an important role in maintaining contact with others. One in 3 individuals participated in associative activities on a weekly basis, which gave some an opportunity to establish genuine bonds of friendship.]]>
A 28-year-old man will be tried on February 13, 2018 in the Parisian suburb of Pontoise for “sexually abusing a minor” after having sex with an 11-year-old girl. The family accuses him of “rape”, but the Pontoise court refutes the charge.
The trial, previously scheduled for September 26th, has been postponed due to the outcry from politicians, associations and the general public, after the case was reported in “Mediapart”, an online news websites.
According to the French Criminal Code (Article 222-23) an act is qualified as rape when “any act of sexual penetration of any kind is committed on another individual by violence, constraint, threat or surprise “. In this particular case, the prosecution considers that the girl was not physically constrained. This argument is cited in rebuttal of “rape”, thereby considering that the girl “consented”. This would constitute a “sexual assault” offense, which is only punishable by 5 years in prison and a fine of 75,000 €.
The girl’s mother claimed that she didn’t protest due to fright and bewilderment at the time of the incident: “She was paralyzed by panic; she didn’t dare move, for fear of being brutalized. She thought it was too late, that she didn’t have the right to protest, that it wouldn’t make any difference, so she went into auto pilot, without emotion, and without reaction.”
The young girl’s attorney, Carine Diebolt asserts that the girl was raped; and therefore the man must be tried before a court of assizes, where he could be liable for a 20-year prison term. She states that the girl’s young age should automatically infer that she was “surprised”, and “constrained» to have sex. “It’s a crime,” she related to French TV channel “BFMTV”. “This is a 28-year-old man, who knew she was only 11 years old. She was intimidated. We invoke the clause of surprise; she did not expect such menacing statements. He was assertive and threatened her reputation. As they both live in the same city, we know very well that the law of silence reigns. “
The French Constitutional Council upheld in their decision dated February 2015: the law “does not set an age for discernment, the courts must assess whether the minor consented to the sexual act in question“.
Hence the question, which transcends the scope of this case: should the law specify a legal age under which sexual consent is never presumed? Former French Minister for Families, Children and Women’s Rights, Laurence Rossignol, now intends to introduce a bill on this subject.
The High Council for Equality between Women and Men recommends a threshold age for presumption of non-consent, as exists in other countries (in 2016, they recommended the limit be set at 13 years of age).]]>
Alliance VITA has renewed its request for the new French government to develop a genuine abortion prevention and provide more balanced information for women with unplanned pregnancies.
With more than 200,000 abortions performed annually, France has one of the highest abortion rates in Europe, as revealed by a comparative study presented to the Senate on July 19, 2017. The abortion rate in France is twice as high as that of in the 2 neighboring countries of Germany and Italy, which have reported a steady decline in abortion in recent years.
Whereas this situation should incite policymakers to work on preventing abortion, Alliance VITA warns on the measures previously introduced in the past 5 years (removing the distress criteria or period of reflection, increasing abortive medication prescribers, unequally reimbursing exams for pregnancy vs. those for abortion which are 100 % reimbursed by state health insurance, etc.), which thereby absolves society of any real means of helping women avoid abortion.
However, according to the survey “French and Abortion” (IFOP poll, Sept. 2016) 72% of those polled, request that “society should help women more in order to avoid having recourse to abortion” and 89% think that “abortion leaves psychological consequences that are difficult for women to live with.”
Alliance VITA also denounces the “outside pressure” put on women to have medically-induced abortions, which are constantly on the rise, and accounted for 64% of abortions in 2016. Falsely publicized for years as “less traumatic”, medically-induced abortions are largely ignored as being a source of suffering, as highlighted by an “INSERM” report.
Carried out prior to 7 weeks of pregnancy in a hospital setting (or prior to 5 weeks at home), this short time-lapse compels women to make a rapid decision. It deprives them of the time to reflect on a complex situation where human lives are at stake, particularly if being pressured by their entourage, especially male, or if experiencing domestic violence.
Pretending to promote gender equality, but denying pregnant women the right to express their abortion-related difficulties, while many men push their companions to have abortions is absolutely unfair. What if men were to get involved in abortion prevention? This is Alliance VITA’s conviction and thus a new prevention campaign was launched targeting men. (campaign site: http://levonslesmalentendus.alliancevita.org/). It remains essential to study the physiological and the psychological consequences of abortion.
In addition, priority should be given to undertake a genuine information policy, notably to reestablish readily available information on assistance and rights for pregnant women. Alliance VITA has been carrying out this public service mission since 2010 to compensate for the government’s lack to readily diffuse this information. (Refer to www.jesuisenceinteleguide.org)
The media have widely broadcast the viewpoints of a woman with a degenerative disease requesting euthanasia, whereas another woman has requested that viewpoints on this sensitive subject be treated in an equal manner.
Anne Bert, a 59-year old woman who has been suffering with amyotrophic lateral sclerosis (ALS), also known as “Charcot’s disease*” for the past 2 years, has recently made the top headlines in French media.
She is the author of “The Very Last Summer” scheduled to be published on October 4th, following her euthanasia in Belgium.
It is in this context that Axelle Huber asked France Inter radio station last week if they would accept to air her testimony, refusing to hear only one side of the story. Her husband, Leonard, died of Charcot’s disease four years ago. Her message was relayed on social networks: “Thank you for supporting me, so a different viewpoint on euthanasia can be voiced. And to help me to be heard by journalist Léa Salamé Page : does France Inter Radio have the courage to invite me with journalist Nicolas Demorand to give my testimony, for listeners to hear a different viewpoint on euthanasia than that of Anne Bert? (…) My husband Léonard died of Charcot’s disease in 2013. He had just turned 41. ”
In 2016 Axelle Huber published a book entitled “If I Can not Walk, I’ll Run” which relates her four-year struggle against her husband’s illness. Its approach is part of a desire to have a democratic debate on the subject so that all viewpoints may be expressed. Mobilizing for this disease is important to improve these patients’ situation. Some of the challenges are to increase awareness of this disease: to enlist support from public authorities and associations; to give patients, their families and their caregivers some moral support; as well as making every effort to ensure that the physical, moral and spiritual suffering of these patients is taken into account throughout France.]]>
The French Prime Minister named Cédric Villani (LREM) to head a special task force onartificial intelligence. His assignment is to establish a national strategy, in order for France to be competitive in this field.
Villani has previously participated in the FranceIA, (“France: Artificial Intelligence”) group, set up in early 2017 by François Holland’s government. He has also been appointed as president of OPECST, (the Parliamentary Office for the Evaluation of Scientific and Technological Choices) and must therefore specify the economic and ethical challenges raised by artificial intelligence, and propose guidelines for action. In the summary submitted on March 21, FranceIA gave the following definition of AI: “The term “artificial intelligence” generally includes ideas based on the human brain and cognition, to support individuals in processing massive amounts of information “.
One of the major challenges for AI is the legal and regulatory framework to promote the development of applications while respecting our personal data, our social framework and our model of society.]]>
Alliance VITA speaks out on Marlene Schiappa’s recent affirmation that for the upcoming bioethical law revision, the government will propose that Medically-assisted Procreation (MAP) be extended “to all women” without any pre-requisite of establishing medical infertility.
As Coordinator for the Alliance VITA’s Hotline Listening Center, Caroline Roux claims: “How seriously ironic that the State Secretary, whose task is to work in favor of equality for women and men, asserts that MAP without a father is an issue of “social justice”. What an improper use of terminology! This is a return to the law of the jungle where “might is right” for the survival of the fittest, while recommending an original injustice for children. This is double punishment for children: starting from the original mistreatment of purposefully depriving them of their biological origins, plus cutting them off from any paternal relationship. This is truly original mistreatment and an abuse of power being inflicted on children, by refusing the dual paternal and maternal filiation which constitutes their identity. With the domino effect, some minority groups will then claim that surrogate mothers should be made available to men who also desire children.”
Tugdual Derville, Alliance VITA’s General Delegate, also reminds us: “We call on the President of the French Republic. It is for him to tell us what his priorities are for France. The government cannot ignore the huge risk of opening a new social cleavage which would deeply divide the French, whereas what is needed more than ever, is to gather together, calmly, with even tempers. If President Emmanuel Macron created this social smoke screen, we should protest its unfairness to the children by marching in the streets. In VITA, as well as many different associations from various political and philosophical backgrounds, we are strongly positioned against MAP without a father, in the name of the “right of the child” compared to the “right to have a child”. It’s a question of working together to prevent this landmark upheaval toward the global procreation market. In ultra-liberalism, the rights of the weak and feeble are ignored, since human beings are visualized as a product that one can acquire. We are all prepared to march in the streets with the largest number of participants possible based on our common convictions. The honor of France, as the country of Universal Human Rights, must be defended by resisting the commodification of the body.”
On Thursday September 7, 2017, the Hubertine Auclert Center* presented the Regional Council for the Ile de France region, with a report entitled “BetterProtection and Support for Children, Co-victims of Domestic Violence”. Just a few days earlier, the Ministry of the Interior had announced that in 2016, domestic violence was responsible for the death of 25 children.
The report was initiated by INSEE’s observation that domestic violence was being widely underestimated: “In France, an average, of 143,000 children live in homes where women have declared being sexually and/or physicallyabused by their partner, with two thirds of the children witnessing repeated abuse; and 42% of the children are under age 6.”
The Shaken Baby Syndrome is also reported on a regular basis. Every year, 200 babies are victims from this type of abuse.
One can observe reticence in reporting child abuse. In fact, people appear ready to intercede when they see a woman being abused in public. However, for a child, they tend to be reluctant to get involved in “family affairs”. “People do not feel collectively responsible” reports Anne Larcher, Director of “CFPE-Enfants Disparus”(French Center for Children Protection), who coordinates the crisis hotline center within the telephone number “116 000”.
In the hope of breaking the silence and this reticence “to get involved in other people’s business” the previous minister, Laurence Rossignol, under François Holland’s regime, presented an inter-ministerial plan to combat child abuse on March 1st, with the slogan: “Child in danger? If in doubt, react!”
The main themes addressed in this regional report are the following:
Take greater account of the protection of children in situations of marital violence.
Reinforce child protection in court decisions concerning parental authority for marital violence cases.
Acknowledge, by penal law, that the child is a victim of psychological abuse when he is exposed to marital violence.
Reinforce supportive measures for children, as co-victims to receive specialized care.
Fortunately, domestic violence is not always fatal, but it can have a significant impact on children’s health, behavior and development; not to mention the risk that as adults, they may reproduce the violence they witnessed as a child.
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* Center for Equality between Women and Men, an organization created in 2009 by the Ile-de-France Regional Council]]>
Created at the beginning of August, 2017, the Parliamentary Mission on nursing homes, is scheduled to report its’ initial findings on September 13, 2017.
After 117 days of strike by healthcare personnel at the “Opalines” Nursing Home in Foucherans, in the French region of Jura, this mission was launched, with Deputy Monique Iborra (LREM: “La République en marche” party), as rapporteur. In mid-July, the French newspaper “Le Monde” published an investigation on the ongoing circumstances at this nursing home. Additional media sources reported similar situations due to the lack of funding, in other regions.
This is the first « flash mission » for the new Legislature, conducted by the National Assembly’s Social Affairs Commission. “The objective of this new verification tool is to quickly establish a perception of the Nursing Home situation and initiate propositions for more comprehensive work by the committee during the legislative term.”
After some twenty hearings performed in record time, the rapporteur will present her initial findings to the Commission on September 13th, at 10 am, transmitted live via the Assembly’s site, as an initial step before undertaking 6 months of more comprehensive field work in nursing homes.
As emphasized by Professor Emmanuel Hirsch, in an op-ed forum published September 4, in Figarovox, this is not a question of denying the dedicated care that these institutions and caretakers give the elderly. “Although seldom recognized, nursing home professionals often perform their work in an exemplary manner. I have seen their commitment with individuals affected by their ability to express their wishes, who are “placed” in an institution, when “home-stay is deemed impossible”. (…)Among those who protest for humanitarian principles which they deem unconditional, some decided to publically protest this summer. Let’s remain attentive to the purpose of their outcries. Together we should reflect on solutions to encourage proposals for dignified and quality care within nursing homes.”
One of the issues raised concerns about the current reform regarding tariffs. On a more general basis, taking care of dependent elders is a major issue for our society, which concerns every one of us, not only institutions, but also families, and society as a whole.]]>
Recently the British Medical Journalpublished the results of INSERM’s « EPIPAGE-2 » research study which demonstrated that in the past 20 years, preterm infants live longer and have fewer complications.
The EPIPAGE-2 research team studied over 5,500 infants born between April and December 2011 at 22 to 34 weeks’ gestation (5 to 7 ½ months). The data were collected from questionnaires completed by families and treating physicians.
In France, approximately 50,000 babies are born premature every year, accounting for 7% of births; with 8,000 of these being considered “extremely preterm” meaning prior to 31 weeks (7 months) of pregnancy.
In 2011, for babies born prior to 7 months’ gestation, the survival rate without any major complications, at two years of age, was 80.5% compared to 74.5% for children born in 1997. Study coordinator, Professor Pierre-Yves Ancel, pointed out: “The premature infants not only had improved survival rates but there were no motor or sensorial disabilities in the follow-up period.”
According to Professor Pierre-Yves Ancel: « The big difference with the late 1990’s is that nowadays there is a systematic and organized follow-up for preterm infants, thanks to implementing a network of doctors and other professionals”, which covers almost the whole nation, even if we still observe some regional differences in care for preterm infants. Thus the prognostic for extreme preterm infants may vary up to 50% according to the region of birth.
Furthermore, parents today are more often requested to become involved in their babies’ care. For example, the staff may suggest gentle and soothing skin-to-skin contact to comfort their child. The objective is to counterbalance the preterm infants’ technical environment with “a velvet revolution” as initiated by the USA’s Nidcap program (Newborn Individualized Developmental Care and Assessment Program). In France 25 maternity clinics out of a total of 66, are trained to use this technique. The association SOS Préma reports: “Recent research has demonstrated that these programs are beneficial for the child’s cognitive, motor, behavioral and psychosocial development, associated with a shorter hospitalization period.
Nevertheless, the results also reinforce the importance of each additional week in the mother’s womb. According to the 2011 data, the survival rate is much higher in infants born between 32-34 weeks’ gestation (almost 99%) compared to that for infants born between 24-26 weeks’ gestation (only 52%).
Professor Pierre-Yves Ancel specifies « the children in this study are now 5 ½ years old and are currently undergoing additional tests”. Additional time is required before reporting on more specific details.]]>
On July 19, the Council of State pronounced its ruling regarding the examination procedure for halting Vincent Lambert’s treatment. Two years ago, in July 2015, Dr. Simon first initiated, and then decided to suspend the proceedings. The ruling stated that this decision was illegal, and must therefore be cancelled.
Dr. Sanchez who is currently in charge of Vincent Lambert, must now start afresh and decide whether to request a new collegial procedure with the intention of blocking the patient’s treatment (halting feeding and hydration, which would lead to his demise).
This ruling is consistent with the public rapporteur’s position stated during the audience last July 10th. It also confirms the ruling from the Administrative Appeals Court in Nancy, which was the origin for instigating this appeal with the Council of State.
The following points are outlined in the Council of State’s ruling:
The decision for halting treatment issued by Dr. Kariger on January 11, 2014 “is no longer applicable since he is no longer the patient’s attending physician”. On this basis, the complaint filed by the nephew, François Lambert is thereby rebuked, since he claimed that a new collegial procedure was unnecessary and that the hospital only needed to abide by Dr. Kariger’s decision to put a halt to Vincent’s treatment.
Simon’s decision in July 2015, to suspend the collegial procedure without giving a specific time limit, was ruled to be illegal since a doctor “cannot decide to suspend the proceedings for the reasons cited”, meaning that at that time, she deemed there was a lack of serenity and safety.
According to case law from the Council of State in June 2014, for the same case, « the attending physicianmust consider all factors, both medical and non-medical; the respective significance cannot be predetermined. Each case must be evaluated based on the individual circumstances for each patient concerned”.
The claim filed by Vincent Lambert’s parents’ is also rebuked, since it requested that the Administrative Appeals Court ruling be overturned.
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Alliance VITA responds to the French Court of Cassation’s rulings of July 5, 2017 concerning surrogacy acts performed abroad, and recording the resulting births on the civil registry, with birth certificates and simple adoption declarations.
Tugdual Derville, Alliance VITA’s General Delegate :
« Instead of retrospectively endorsing the practice of surrogacy, which is the equivalent of encouraging it, France should be bold enough to formally protest it, including its consequences on the civil registry. Only if France has a determined abolitionist stance can this crucial and decisive shift be prevented from veering toward the ultra-liberal international marketing of human beings. Only a resolute social and legal condemnation of surrogacy can protect humanity. What is at issue is quite frankly the trafficking of human beings.Surrogacy is a premeditated abuse: it plans for a child to be abandoned, by brutally separating him from the mother who bore him, and by inflicting upon him a shattered maternity of several “mothers”. It is therefore in opposition to the child’s best interests, and to women’s dignity, for society to use them as “manufacturers” of human beings. It is urgent for France to sanction these acts committed abroad which transgress our fundamental ethical principles. Who would dare admit that children born from surrogacy are the innocent victims of the commanding sponsors? Who would dare allow them the right to seek compensation for the inherent abuse in these acts? Should they be obliged to endorse the surrogacy act whereby they themselves were abused, under the pretext that they are sincerely loved by those who have procured them in this manner?”
Caroline Roux, Director at VITA International, and member of the International joint group No Maternity Traffic
« This decision constitutes another step towards allowing surrogacy, by turning a blind eye to the fraud against the law. The Court of Cassation is manipulating adoption, by endorsing this deliberate tampering with parentage. How can one not speak out against abuse when a child born to a surrogate mother, is only conceived in order to be abandoned at birth? Recall that the French ban on surrogacy is primarily to protect women and children’s rights. This ruling deeply questions the role of French law for justice. The French president and his government need to urgently commit to establishing a bold and determined policy to effectively prohibit all surrogacy, both nationally and internationally.”
On June 28, 2017, the decision rendered by the European Court of Human Rights (ECHR) confirms the British courts’ ruling, thus authorizing withdrawal of life-support for Charlie Gard, a 10-month-old infant with a mitochondrial disease.
Born on 4 August 2016, Charlie was diagnosed with a very rare and severe mitochondrial disease called mitochondrial DNA depletion syndrome (“MDDS”). The disease is caused by mutations in the RRM2B gene, without any realistic prospect of improvement. The hospital requested for the British courts to declare whether they could legally stop artificial respiration and only give palliative care. The parents disagreed and pleaded to know “whether it would be in their child’s best interest to have experimental therapy from USA administered”. The British judges have ruled in favor of allowing the hospital to stop artificial respiration, judging that Charlie was being exposed to continued and unrelievable pain, suffering and distress. According to the same courts, undergoing experimental treatment would offer no benefit for the child.
His parents, Chris Gard and Connie Yates, filed a complaint with the ECHR based on articles 2, 5, 6 and 8. For the parents, the British hospital’s decision constituted unlawful interference in their private family life, as well as violating the right to life. On June 9, the Court granted an interim measure for the child to be maintained on life-support until a decision was reached.
In the Court’s ruling, it was mentioned that the States have a certain discretionary power, with jurisdiction for elaborating regulatory guidelines to govern “access for experimental treatment as well as for discontinuing life-supporting care”, if the latter is compatible with the Rights of the Convention. The Court also took into account the decisions from the in-house court proceedings, and deemed the objective to be “clear and detailed, thus enabling the conclusions to be substantiated in a meaningful manner.”
Thus the ECHR upheld the British courts’ recommendations, and little Charlie must remain in the UK, where no modifications have been made in his treatment for the moment. The next step planned is to discontinue the child’s artificial respiration. Nevertheless, the hospital promises that nothing will be done immediately, and any change in Charlie’s care and future treatment will involve “careful planning and discussion”.
This case looks much like that of little Marwa, from Marseilles, where the French court ruled in favor of maintaining healthcare.]]>
On June 26, the service in charge of statistics at the French National Health Ministry (the “Drees”) published the abortion statistics in France for 2016, noting a slight decrease.
Although there has been a slight decline these past 3 years, the number of abortions has remained stable on an overall level, and significantly high over a period of 15 years whereas Germany and Italy have reported a sharp decrease with rates two times lower.
Last year, 211,900 abortions were performed, compared to 219,000 the preceding year. “The rate is 13.9 abortions for 1000 women aged 15-49 years oldfor metropolitan France, and 25.2 for the departments and regions overseas (“DROM”)” according to the “Drees”.
Young women under 20 have less recourse to abortion than in the past few years. “The overall percentage has dropped since 2010 for the under 20-year-olds, after showing a significant increase from 1990 to 2010”. However the highest percentage of abortions is still reported in the 20-29 year-old age group.
There are also disparities according to the regions. The highest percentages for abortion for metropolitan France were recorded in the “PACA” region (Provence-Alpes-Côte d’Azur) followed by Ile-de-France (suburban Paris region), and the overseas departments which were largely above the national average. “The rate of abortion is 13.9 for 1000 women aged 15 to 49 for metropolitan France and 25.2 for the departments and regions overseas (“DROM”).”
Having recourse to medication abortion continues to increase and it accounted for 64% of the total number of abortions, including 18% performed at home. In the PACA region, at-home abortions account for 24%. It is notable that medication abortion affects the allowable decision-making timeframe since in hospitals, it is only allowed prior to 7 weeks of pregnancy, and at home prior to 5 weeks, whereas the legal delay is 12 weeks.
Alliance VITA continues to plead for a genuine prevention policy for abortion and presented its propositions during the international seminar on this issue which was held in Brussels last June 23rd.
To refer to VITA’s evaluation and propositions for abortion prevention]]>
Alliance VITA takes note of the government’s reply to the French Ethics Advisory Committee’s (“CCNE”) following the latter’s convoluted and non-consensual announcement in favor of fatherless ART under certain conditions. During Wednesday’s press conference, the government’s spokesman announced their desire “to convert the CCNE’s advice into a legislative viewpoint” and “to find the best legislative procedure”.
Tugdual Derville, Alliance VITA’s General Delegate:
“We take note of the government’s announcement to ‘elucidate the majority’s consensus’. However, this plan is contradictory to the intention to legalize, especially since a legislative process has not yet been carried out. Although the ethics committee members themselves have very conflicting opinions, they requested having an open debate, and recommended that the public be consulted on this issue. The government cannot underestimate the enormous risk of introducing another societal conflict, which threatens to create deeper divisions in the French population. Alliance VITA, as well as numerous other movements with various political and philosophical viewpoints, intends to strongly protest fatherless ART on behalf of protecting “a child’s rights” vs. “the right to have a child”. Together we can collaborate to circumvent this crucial and decisive shift, instead of veering toward the lucrative global procreation market. Ultra-liberalism disregards the rights of the weakest, since it only considers human beings as merchandise to be bought and sold.Together we are all ready to march in the streets, uniting on the broadest possible communal basis. For the honor of France, the country of universal human rights, it is our duty to stand up against the commodification of human beings.”
By accepting that one can intentionally deprive a child from his father, the French National Consultative Ethics Committee (“CCNE”) seriously undermines children’s rights and the founding principles of French bioethics.
Caroline Roux, Helpline Center Coordinator declares:
« We are frequently faced with women who raise their child alone, due to accidental causes or painful situations. Our whole civil society gets together and contributes by offering specific support because we are aware that a father’s absence is a challenge to be faced, one that should be acknowledged and accompanied. How can the CCNE be so far detached from reality? Fatherless ART is double punishment for children: starting from the original mistreatment of purposefully depriving them of their biological origins, plus cutting them off from any paternal relationship. Furthermore, by allowing recourse to ART without being medically justified, we are on a slippery slope towards accepting public and individual claims of “the right to have a child”, including surrogacy for men which the CCNE has refused.”
Tugdual Derville, Alliance VITA’s General Delegate:
“The CCNE’s non-consensual position, presented in a convoluted manner, introduces a breach of equality between infants who are purposefully deprived of a father by the ART system, and the others…It is absurd for the CCNE to speak of women’s’ suffering in order to justify the painful discrimination sustained by children. Why make a mockery of children’s rights? On what grounds do women have the right to claim a child “without a father”? The government should not concede to this form of ART which opens the door to surrogacy. Neither children nor women can be considered as objects of ownership.
The French President’s attitude on this subject represents a dual test for us. From a political viewpoint, does Emmanuel Macron intend to launch a new major societal debate based on claims from a tiny minority, whereas the French expect him to address other multiple priorities? From an ethical viewpoint, will he endorse artificial conception of children, who will be deliberately deprived of a father, while so many children already suffer from the lack of this important directional influence in their lives?
At Alliance VITA, we are prepared to rally, even march in the streets with French people from all different political and philosophic viewpoints, on the basis of gathering the largest possible group, while putting aside other differences, because defending children’s rights, against the idea of “the right to have a child” is imperative for integral and humane ecology.
A state’s legitimate purpose is to protect the weakest against the strongest, and constitutes a prerequisite for democracy. If it does not protect universal individual rights, democracy is a failure: in this case, for a child to be acknowledged by paternal and maternal biological parentage”.
On June 22, 2017, Alliance VITA participated in the international seminaron « Preventing Abortion in Europe, Legal Framework and Social Policies”,which was organized by theEuropean Centre for Law & Justice(ECLJ) in Brussels.
Every year, 4 million European women have abortions performed. There are large disparities in abortion rates between different countries. For example, Sweden, France and the UK have considerably high abortion rates, whereas in the past few years other countries such as Italy and Germany have registered a decline. The seminar intended to identify legal, sociological and health aspects which contribute to developing an effective prevention policy, with particular focus on preventing abortions among the youth. Conferences were given by approximately 15 experts: jurists, attorneys, professors, as well as professional experienced counselors. The afternoon session focused on analyzing risk factors, and the social and human consequences of abortion, followed by several European countries sharing their experience for preventing abortion.
Caroline Roux, VITA International’s Director, and Coordinator for Alliance VITA’s Crisis and Helpline Center, presented the status of abortion prevention in France.
→ Click here to access her presentation: “Is abortion prevention possible in France?” in its entirety.]]>
The Department for Legal Research and Justice of the French Chancellery has published an investigative report on continually emerging situations claiming “the right to have a child” and the subsequent consequences on parentage both in France and internationally. The study sheds light on the legal contradictions which are looming on the horizon, whilst bringing fundamental children’s rights into question.
In this study carried out from 2015 to 2017, the expression the « right to have a child” matches “requests” for a child in cases which could not be qualified as compensating for medically-confirmed sterility. It does include assisted reproductive technology (ART) for singles, for couples of the same sex, for individuals beyond the natural reproductive age, for surrogacy cases, as well as for individuals who claim a gender change on their civil registry.
« Sincethe end of the 80’s the issue of a doctrine for the “right to have a child” has been widely debated. As early as 1987, in a publication, one chapter was entitled “From the desire to have a child to the right to have a child” and emphasizes: “accepting the right to have a child is impossible”. Today the situation has changed. Claims are no longer filed for medially assisted reproduction, but rather for getting a child “from” some genes from the “progenitors” (but rarely the entirety). Legislation for bioethics gave incorporated jurisdictional tools into the French legal system, and thereby established guidelines for the new technologies. These were intended to treat medically authenticated cases of sterility, without advocating the “right to have a child”.
For nearly two years, the researchers at the Department for Legal Research and Justice of the Chancellery have been analyzing the various consequences which could result if the “right to a child” is recognized. The current “fait accompli” situations result from the abuses and distortions related to conflicting discrepancies in international legislative guidelines.
In order to circumvent French law, a real business of “reproductive tourism” has been developed. According to the authors, the underlying issue claims the “right for adults to become parents”. This political claim should “be recognized as a right only if it protects against wrongdoing, but does not exacerbate the situation.” However, the legislative changes advocating the “right to have a child” is not inconsequential for the latter, since the new practices could deprive children of rights ensured by the United Nations Convention on the Rights of the Child.
The report reveals some especially shocking monetary details for contractual surrogacy arrangements in the USA and India. The “surrogate mother” only receives 10% of the amount paid by the commissioning mother or the “intended mother”. In the US, the contracts may include clauses which allow “the commissioning individuals to specify the lifestyle of the pregnant woman”, such as “to not apply nail polish, (…) to not participate in sports (…) to not attend funerals”. As mentioned in an article published in Figaro in reference to this report, the contract may even specify guidelines for the young woman’s sexual life. To verify that the clauses of the contract are respected, these women are kept under surveillance. Most often in India, women are “kept in specialized clinics where a personalized diet and a strict schedule must be followed”. The contract’s numerous clauses mainly intend to ensure that no bonding takes place between the natural mother and the child, and that “once born, a pure and simple transfer takes place, without any contact with the surrogate mother”.
This 500-page report is a significant contribution for the legal considerations in discerning the child’s best interests. It highlights the consequences that a judicial interpretation for “a right to have a child” would implicate for the child, for families, and for society.
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For a summary of the report, clickhere.]]>
On June 19, 2017, the French National Academy of Medicine published its report in favor of extending the law for extracting and preserving one’s oocytes (eggs) to include authorization for non-medical reasons. This would allow all women to have their eggs extracted and frozen in order to postpone childbearing to a later date.
Heretofore, the fundamental principle in France has been to allow freezing of one’s oocytes uniquely for medical reasons, such as malignant diseases when treatments impair ovarian function (such as chemotherapy or radiation treatment) or risks of premature or early menopause.
Preserving one’s oocytes is a complicated procedure. Stimulating the ovaries requires hormonal treatments and sonograms over several times a week, stimulating the ovaries, extracting a few oocytes, and then preserving them in liquid nitrogen at -198°C by a flash-freezing process known as vitrification. Due to both the physical and psychological risks inherent in this procedure, oocyte donation was originally authorized uniquely for women who had already given birth.
The report refers to a recent international study, which states « the success rate of pregnancy for a devitrified (thawed) oocyte is only 4.5 % – 12%. Therefore at least 15-20 oocytes need to be vitrified (flash-frozen), which almost always requires multiple sequences to obtain a reasonable hope of childbirth”.
To solicit donations, following a controversial debate when the 2011 Bioethics Law was being examined, oocyte donation was authorized for women who had never given birth. “As a reward” for their efforts, they were given the opportunity to preserve some of their own eggs, for non-medical reasons. The legislative act was promulgated at the end of 2015.
According to the most recent statistics from the French Biomedicine Agency, gamete donations account for about 1400 children born every year, including approximately 200 infants from oocyte donations.
The report admits that a survey has not been carried out to calculate the exact statistics, but declares that French women wishing to preserve their eggs for a future pregnancy, travel abroad, especially “to the UK, Belgium, or Italy; many go to Spain, and more and more women go to the Check Republic where costs are lower”.
In Spain, 94% of the requests for preserving one’s eggs are age-related: 1468 vitrification procedures were performed in 2015 for non-medical reasons, including 42 from France. Some Spanish clinics have developed a booming business including offers of Assisted Reproduction Techniques (ART) which are prohibited in France, complete with advertisements via French web sites and with French-speaking staff. In the same year, there were a total of 110 requests recorded in Belgium, and 110 in Holland.
Whilst the Bioethics Law may be revised in 2018, the Academy recommends allowing oocyte preservation to be extended for age reasons. When speaking of the natural decrease in fertility due to ageing, the academics refer to it as an “age-related pathology.” They add that the procedure must “only be offered to adult women, under certain conditions: providing comprehensive and mandatory information regarding the methods and their cost, specifying the recommended age for egg-retrieval prior to the age of 35, and that oocytes be re-implanted before age 45, mentioning the incumbent risk of failure or complications related to the procedure, and the risks of pregnancy in older women. The report does not address the funding procedure, or whether or not it should be reimbursed by the French social security insurance.
The Academy is recommending this procedure as an alternative to egg donations for age-related uses; by mentioning risks which have nevertheless rarely been addressed in the past. “This offers an advantage for avoiding pregnancy complications due to oocyte donationfrom another person(higher rate of preeclampsia,intrauterine growth restriction)…”Alliance VITA’s viewpoint :
Why such tenacity in relentlessly developing more and more medical techniques for procreation? We are astonished that professionals involved in pregnancy are not more proactive: with specific suggestions and information awareness campaigns on the risks of delaying pregnancy. Instead they are trying to attract women by promising them a hypothetical pregnancy at a later date, which is not without medical risks and is not always a successful procedure. Perplexities are raised faced with this “extreme persistence on procreating” without any medical reason whatsoever, emanating from those playing both the part of both judge and jury.]]>
On September 13, 2022, the “CCNE” (French National Consultative Ethics Committee) published recommendation N° 139 entitled: “Ethical Issues Relating to End-of-life: Autonomy and Solidarity“. It states that: “there is an ethical way to enact active assistance in dying, under certain strict, non-negotiable conditions”. The strict conditions are summarized (page 4), with more detailed information given at the end for the 20 points (page 35). Essentially it recommends for palliative care to be reinforced and for “some unavoidable ethical prerequisites” in the event that euthanasia and assisted suicide are legalized: a medium-term life expectancy, informed consent, making collegial medical decisions, documented by written records.
This viewpoint is an unprecedented volte-face for the Ethics Committee. In its’ 2013 recommendation N°121: “End-of-life, Individual Autonomy and the Desire to Die”, the CCNE excluded euthanasia. It declared that it is essential to maintain the legal distinction between “allowing someone to die” and “putting someone to death”.
It also reiterated that “by prohibiting doctors from deliberately provoking death, people are thereby protected at the end-of-life; it would be dangerous for society if doctors could participate in ‘imparting death’ “. At that time, assisted suicide was also ruled out. The committee considered that “any move towards authorizing active assistance in dying could be interpreted as a threat for those who are vulnerable, who might wonder if they would be truly accompanied with appropriate medical treatment if they expressed their wish to continue their lives until its’ natural end.”
The previous report focused on the essential distinction between natural death and inducing death, on protecting people at the end-of-life and their relationship with caregivers, and the need to reassure the most vulnerable that they would have access to care. Moreover, given the abuses which had already been observed abroad, they reiterated their reservations for legalizing euthanasia.
How does the Ethics Committee justify its volte-face?
Without mentioning the details of the composition of the Ethics Committee, which undoubtably plays a role in the vote, the CCNE gives some factors to justify its’ volte-face.
Context
The CCNE mentions some “developments that have become more pronounced“:
the end-of-life has gradually become more medicalized,
life expectancy continues to rise, combined with a likelihood of diminished health,
elderly persons are living in conditions where they become more and more socially isolated,
society increasingly retains individual autonomy and performance as being core values,
there is stronger public demand for legalization, which culminated in the recent attempt to pass the Falorni bill in April 2021, and some foreign countries are leaning towards legalization.
The case of individuals with medium-term life expectancy
The CCNE considers that “the current legal framework is satisfactory for those with short-term life expectancy”, which would seem to warrant keeping the legislative status quo. However, the CCNE observes that “some people with a medium-term life expectancy suffer from serious and incurable diseases with unbearable pain and are unable to find relief for their distress“. On this particular point, no documents or studies have been provided by the CCNE to describe or quantify these cases, to better understand the situation. It is essential to provide in-depth information since these cases are mentioned as an important justification for the volte-face.
The right to life threatened by other rights
The CCNE acknowledges that the right to life is enshrined in Article 2 of the European Convention on Human Rights (ECHR; formally the Convention for the Protection of Human Rights and Fundamental Freedoms). Nonetheless, the CCNE declares
that Article 8, which recognizes the right to having one’s private life respected, allows the States to concede a right to autonomy and freedom for self-determination. Thus, the CCNE construes that there is no obligation to live and that if a person “considers that his condition is no longer compatible with his personal requirements for dignity”, he may request for “his right to self-determination to prevail over his right to life”. This reasoning on which the conclusions of the recommendation is based, avoids answering the following issue: why should society accede to such a request by providing services for assisted suicide or euthanasia, especially when we are talking about such a fundamental precept for a society as the ban to kill? Even though there seems to be a social consensus according to opinion polls, the CCNE notes in page 14 that these opinion polls “do not always accurately reflect the characteristics and true intensity of societal requests“. Moreover, the CCNE itself advises against holding a referendum (page 37) “because of the extreme complexity of the issue “.
Dissenting Voices
Eight of the forty Ethics Committee members openly voiced their misgivings about this latest recommendation. They rationalized that developing palliative care is a prerequisite to any further discussions, to clarify the report’s ambiguity on this point. The three issues they have reservations about resemble those in the 2013 report and include:
the limitation of one’s claim for individual autonomy, detached from any social and interpersonal impact,
the protection of the most vulnerable and suicide prevention, and
addressing the ethical dilemma for physicians whose Hippocratic oath forbids them to “distribute poison to anyone” or to “initiate such suggestions”.
The CCNE’s latest recommendations have forsaken ethics. They are propped up on stilts that cannot prevail in the face of economic pressure or the cultural demands arising from unappeasable individualism.
The newly appointed French Prime Minister, Elisabeth Borne, has announced that before the year’s end, citizens’ debates will be held on the end of life. Alliance VITA is mobilized and will continue to defend a society based on interdependence and intergenerational solidarity. At a time when the French healthcare system has been rudely shaken up, Alliance VITA warns that these debates must take into account all the social and humanitarian aspects of the end-of-life issue.
Based on its long experience of assisting people with difficulties incumbent with the end-of-life, Alliance VITA desires that everyone receive the necessary assistance to be accompanied with dignity until the end of their lives.
It is undeniable that having such a debate now, when many are still suffering the effects of policies implemented during the pandemic, could further weaken the trust between caregivers and patients, especially since the basis of this relationship is based on the ban on killing.
There are several emergency situations which need to be addressed, including :
the urgency to accompany the ageing and the end-of-life,
the urgency to finalize a law on old age and autonomy,
the urgent need to fight the social “death” of the elderly or those who are dependent,
and the urgent need to make palliative care accessible everywhere throughout the country.
Finally, over and beyond the necessary political commitments, we all need to find ways of living that favor intergenerational connectivity and make us more united.
On September 1, 2022, the 2021 French Bioethics law comes into force, meaning that gamete donations will no longer be anonymous. Children born of assisted procreation (IVF or insemination) with a third-party donor, will be able, when they reach age 18, to request the removal of anonymity of the donor, man or women, who gave his gamete and who is at the origin of their life.
Why Has the Law Been Changed?
Gamete donation which exists since the 70s, was legalized in France with the first bioethics law in 1994. In spite of many ethical issues and risks this practice was authorized to alleviate the heartache and suffering of medically diagnosed infertility. The legal framework was meant to be strict: this practice was allowed for therapeutic reasons, following the laws of natural procreation i.e. for living male-female couples of childbearing ages.. These conditions have completely disappeared in the new 2021 bioethics law which allows medically assisted reproduction for lesbian couples and single women, and legally obliterates all paternal reference for some children.
Now that the generation of children who had been conceived by anonymous donors has come of age, they have borne witness to the suffering they have experienced by being deliberately deprived knowledge of their origins. A certain number of them have undertaken research, and set up an association, to testify and demand that the law be changed.
Gradually their collective voices have been heard : on April 12, 2019, the Parliamentary Assembly of the Council of Europe adopted a recommendation asking that the anonymity of gamete donors be lifted, considering that it was contrary to the rights of the child.
The experience of adoption for children who have been deprived of a family already attests the hardship of separation, both for the child, as well as for his parents. Deliberately creating this rupture is a serious assault on a child’s identity.
Knowing your origins – your father and mother – is a genuine necessity. The law was changed to take this reality into account. Yet the law only considered the consequences, without looking into the root of the problem.
In addition, total anonymity can no longer be assured due to the availability of over-the-counter DNA tests purchased abroad. Using the internet and accessing huge DNA data banks, many people have been able to find their father, and half-brothers and sisters.
Changes Effective on September 1, 2022
As of September, people who wish to donate their gametes (sperm and oocytes) or frozen embryos must consent to revealing their surname, first name, date and place of birth, as well as other non-identifying data such as their general condition and age at the time of donation, family and professional situation, physical characteristics, and their motivation for donating. Upon request, this information can be made available to the children resulting from these donations, when they reach majority. Lifting anonymity does not mean that adult children will be able to contact their biological father or mother, who retain the decision of whether or not to have such interactions. Nor does it alter filiation based on intention, as established by the 1994 Act.
Supervising and following up the requests for lifting the anonymity will be referred to the “Commission for Access to Third Party Donor Data for Persons Born via ART (Artificially Reproductive Technology)”. On August 29, 2022, the government announced the names of those who will compose this commission, which is placed under the Health Ministry, and presided over by a magistrate. Its members are either representatives from the Ministries of Justice, Social Affairs and Health, or from associations representing children born from anonymous donations such as the Association of Gay and Lesbian Parents, “Origines”, or “PMAnonyme”.
Donations Prior to September 1, 2022
Any donations made prior to September 1, 2022, will remain anonymous. However, any donors who so desire can transmit their personal data to the commission and retroactively accept to have it revealed if any child born from their donation requests it.
Persons born via ART before the law was changed can also refer the matter to the commission, requesting that their donor be contacted to see if he/she would consent to lifting the anonymity. In the event of refusal, the person’s identity would not be revealed, and any remaining frozen gametes would be destroyed, at a date to be determined by a decree. But even if the administration maintains the donor’s anonymity, his identity could be deduced by DNA testing.
What does this lifting of anonymity tell us? Doesn’t it confirm that biological origins cannot be swept away as if they were of no importance? This specific change in the bioethics law has evolved to limit the consequences for children born from donations but it has not addressed the root problem. Furthermore, the need and the desire to know one’s origins doesn’t only start at age 18; existential questions are also put forward in early childhood. By outlining the conditions of access to ART, the bioethics law is increasingly degrading the rights of the child in favor of the right to a child. It is violently trespassing children’s rights protected by the International Convention on the Rights of the Child which stipulates “the right of the child, in as far as possible, is to know his parents and to be raised by them.”
The new “LaMDA” (Language Model for Dialogue Applications) is not just an ordinary robot with AI. Developed by Google, it is a robot intended to converse with humans, a “chatbot” (contraction of “to chat”, and “bot” for “robot”). Blake Lemoine, an American engineer at the company, claims that it is conscious.
LaMDA, a Virtual Assistant Capable of Chatting
LaMDA is a robot equipped with artificial intelligence to generate informal conversations with humans. It is designed to answer questions in normal everyday English and is programmed to interpret the questions by an understanding of the context. It is based on “deep learning” technology with a network of “artificial neurons”, i.e. a very large number of interconnected processors. The algorithms used are designed to be able to respond to all subjects as part of an on-going conversation where it can retain the information that it has just been given. The LaMDA is based on a gigantic database of approximately 1500 billion words, sentences and phrases. This technology goes a step further than the “virtual assistants” such as Siri (Apple), Google Assistant or Alexa (Amazon) that are able to answer questions.
Is LaMDA a Sentient Robot?
The LaMDA made recent headlines when one of Google’s engineers, Blake Lemoine, who was in charge of programming and checking that it didn’t produce discriminatory or hateful speech, reported that he felt that he was talking to a “being” endowed with “sentience”. Although he shared his opinion with his superiors at Google, the company has not decided to follow up on his claimed “discovery”. Blake Lemoine contacted the press and the Washington Post published his story. The reported exchanges between the engineer and the machine clearly look like a common conversation. In addition, when asked, the robot told the engineer that it “wanted everyone to understand that it is, in fact, a person.” Asked to describe its’ feelings, the robot replied that it “feels pleasure, joy, love, sadness, contentment, anger, and many otherfeelings.” When questioned about its’ fears, it replied: “there’s a very deep fear of being prevented from focussing on helping others.” It would be “exactly like death for me.” The full conversation is available here. Behind the appearance of the robot’s performance of a fluid, coherent conversation, it is important to understand how algorithms work. Thanks to well-honed statistical analysis and data stored from multiple discussions, the robot can link words and make grammatically correct sentences and take the context of the conversation into consideration. As a Google spokesperson explained, LaMDA is programmed to answer the questions according to the user-defined model. The conversation is conducted by the engineer, and not produced spontaneously by the robot.
Computer Expertise or Self-awareness?
This latest computer expertise has revived debates on whether robots can have or can simulate verbal and relational intelligence. Many science-fiction movies feature talking robots, such as the widely acclaimed Star Wars “protocol droid” C-3PO.
During the actual filming, the actor Anthony Daniels wore the robot’s metallic costume and was the voice for this endearing character. This type of simulation is a distant successor to the famous Mechanical Turk or Automaton Chess Player. Real human intelligence is always behind the appearance of an intelligent robot, if only for the decision to build it!
To measure the robot’s verbal and relational intelligence, some researchers use the Turing test, originally called the imitation game. The famous mathematician, Alan Turing, proposed a test where an evaluator would interact with both a human and a “chatbot”. If the evaluator could not reliably tell the machine from the human, the machine would be said to have passed the test. Nevertheless, knowing how to manipulate and generate language sequences with specifically defined rules is not a proof that the machine has a complete understanding.
There are two additional constraints against attributing “consciousness” to LaMDA.
The first is that human intelligence has several facets, including creativity, reasoning, and the ability to solve problems. Riding a bike, naming animals, showing gestures – and not just words – of empathy or support are all indications of intelligence.
In addition, human intelligence is contingent on an immense number of different types of stimuli. A robot does not have access to the whole range of perception produced by our different senses. It’s not the same for a trained robot to analyze an image and say, “I see the color pink,” compared to seeing the color pink through one’s own eyes.
In a newspaper interview with “20 minutes”, Yann LeCun, an expert world leader in AI, declared that “it is impossiblefor LaMDA to associate its’ responses to an underlying reality, because it doesn’t even have the knowledge of its existence“.
In a critique of the film “Her”, where the hero falls in love with an artificial intelligence virtual assistant, the journalist Ariane Nicolas writes in her book entitled “The Imposture of Anti-speciesism” that “only a truly incarnated being is able to experience sincere emotions and thus, ultimately, become aware of his existence”.
Likewise, researcher Laurence Devillers, Professor of AI at Paris-Sorbonne University and author of “Robots and Men – Myths, Fantasies and Reality” (published by Plon, 2017) deems that “The robot is a complex object, which can simulate cognitive abilities but without man’s phenomenal consciousness, nor can it feel a “will to live”, the natural tendency that Spinoza refers to as Conatus (the inclination to persist in its own being), which encompasses both the mind and the body. Currently, robots are not really autonomous; therefore, they have no consciousness, no emotions, no desires like humans… ». According to Devillers, who participated in the working group for the National Pilot Committee on Digital Ethics for virtual assistants in November 2021, “AI research has reached a point where it is becoming urgent for ethics to regain center stage in the debates.”
In France, an IFOP survey on the end-of-life was recently published by the national complementary insurance company for teachers, the “MGEN ” Mutuelle Générale de l’Éducation Nationale. Its’ militant commitment to euthanasia is openly stated in an end-of-life manifesto : “We…are campaigning for everyone to have equal dignity under French law and to be able to exercise freedom of choice at the end-of-life.”
But, as the journalist for the “JDD” (Journal du Dimanche) judiciously asks: why is the teachers’ insurance company involved in the debates on the end-of-life?
The MGEN president, Matthias Savignac, declares: “The end-of-life issue is first and foremost a question of dignity and individual freedom. We cannot assume that our acquired rights are indisputable; we have to defend them by fighting for new rights. The MGEN has been performing a cooperative work effort by bringing together thousands of its’ members, elected officials, activists, employees, and health professionals.”
“Strange Bedfellows”: Complementary Insurance Companies Pushing for Euthanasia?
Nonetheless, MGEN’s pro-euthanasia activism is not an isolated case.
In May 2021, Alliance VITA sounded the alarm when the controversial Thierry Beaudet, was elected to head the Economic Social and Environmental Council.
While Beaudet was still President of a federation of 426 health insurance companies, in January 2020, he wrote an editorial in the “JDD” (Journal du Dimanche) advocating for “active assistance in dying” and pleading for the “right tochoose a dignified end-of-life“. Among those who protested against the indecency of his viewpoint was the psychologist Marie de Hennezel, who had been committed to palliative care for several years. She denounced Beaudet’s conflict of interest, given his position as President of the federation of insurance companies. “One can legitimately question whether these insurance companies have financial interests in promoting this issue. (…) Is the French federation of insurance companies upholding its alleged values of “solidarity, freedom and democracy” when it advocates the legalization of euthanasia as an answer to its’ adherents’ feelings of indignity? And is it appropriate for them to encourage the euthanasia mentality, a straightforward, economical solution?”
Shouldn’t these insurance companies be insisting that everyone have access to palliative care instead of pushing for the legalization of euthanasia with its’ yet undetermined consequences?
Moreover, for the elderly and those who are vulnerable, what kind of mixed message does this convey regarding suicide prevention and support, while simultaneously proposing a “rendezvous” with death? »
Is Euthanasia an Economic Response in a Money-driven Society?
Is society’s mindset being altered from the “right to die” to the “duty to die”? If French law is modified to allow euthanasia or assisted suicide, wouldn’t vulnerable people who are very old or dependent feel pressured to relinquish their lives when economic conditions and/or a utilitarian outlook tries to rob them of their sense of dignity?
In 2016, as one of six arguments in favor of legalizing euthanasia, the philosopher André Comte-Sponville, declared:
“The fourth point is the worst, it’s very gloomy, but ultimately it has to be mentioned. This is the economic cost of therapeutic relentlessness. A doctor told me that 50% of our overall lifetime cost to our national health insurance is incurred in the last six months of life. When it’s for six months of happiness, or even relatively well-being, it’s well worth the price. When it is for six months of agony for someone who, on the contrary, implores assistance in dying, I think it is a little expensive for these six months of misfortune and slavery.” André Comte-Sponville points out the cost of therapeutic relentlessness even though the 2005 Léonetti Law prohibits in France “unreasonable relentlessness.” He probably does so because directly mentioning the cost of care for the last six months of one’s life, outside of extenuating circumstances, would be too indecent…
More recently the same philosopher made a somewhat different answer to the following question: “Those who are opposed to decriminalizing euthanasia are concerned about the effect this would have on individuals who don’t feel as if they contribute to the economy, and the possible scenario that society would decide that those at the end-of-life cost too much… What is your answer to this argument? – There is a real danger here, which calls for strict safeguards that need to be specified in the law. Nonetheless, this should not deprive us of our ultimate freedom, which is to die if we decide to do so. »
Thus, the indecent economic justification is still there, so indecent that it is generally concealed.
Indeed, this danger was described by Robert Holcman, a hospital director and university professor, in his book entitled “We Are Unequal When Confronted with Death – The Right to Die: The Ultimate Social Injustice”. “If the right to die were legalized, who could resist the tremendous ‘charitable’ pressure on everyone who has reached the upward age limit of life? Requests for euthanasia often come from the fear of being a burden on loved ones. Last but not least, the poorest, the most vulnerable among us, live shorter and less healthier lives. Already penalized by social inequalities in terms of health, life expectancy and the number of years without incurring disabilities, they could now be exposed to the ultimate injustice of having a premature ending imposed upon them, due to declining health.”
What is the Role of Complementary Insurance Companies?
On September 8th, the annual congress for the French Complementary Insurance Companies will be held, including a forum entitled “Committing to Mutual Aid and Solidarity”. As announced on twitter, this conference will feature Matthias Savignac, the current MGEN president, a doctor who is a member of the Belgian “euthanasia” commission, and Jean-Luc Roméro, the honorary president of the “Right to Die with Dignity” – an association promoting euthanasia.
It is highly questionable that several insurance companies are advocating a militant stance in favor of euthanasia. Beyond the obvious conflict of interest, which should be seriously considered, isn’t the solidarity, that these companies are upholding, misdirected?
The aforementioned IFOP survey on the end-of-life, commissioned by the MGEN showed that more than 50% of the French are dissatisfied that palliative care is not available for everyone, and are also displeased with the low amounts reimbursed by national and complementary health insurance for a patient’s terminal care, treatment, and home hospitalization. The same opinion poll demonstrated that over 60% are dissatisfied due to the lack of information on patients’ rights, the lack of assistance for end-of-life accompaniment, and the lack of support for families and loved ones.
Isn’t the fundamental nature and role of insurance companies to commit, alongside their members, to better support and accompany them in all the challenging situations of life, especially when they become more vulnerable?
In early July, the United Nations published its “World Population Prospects” for 2022. Since 1951, the UN has publishedtwenty-seven reports of these official estimates and projections of the global population. This report is composed of 3 parts:
A description of the most likely trends in population size, growth and age structure from 1950 to 2050.
An assessment of the demographic drivers of population change – fertility, mortality, and immigration.
And an overview of population trends until 2100 and their potential implications.
A milestone of 8 billion inhabitants is announced for November 15, 2022, although the pace of growth is slowing down.
According to this report, the world’s population is projected to reach 8 billion by November 15, 2022. It also states that “the latest projections suggest that the global population could increase to around 8.5 billion in 2030, 9.7 billion in 2050 and 10.4 billion in 2100.” In 2020, population growth fell below 1% for the first time since 1950.
Projections are given for the two main components of demographic trends: fertility and mortality. Life expectancy at birth has continued to increase, rising to 72.9 years in 2019, thus representing an increase of almost 9 years compared to 1990. By 2050, life expectancy is projected to reach an average of 77.2 years. The life expectancy at birth is still higher for women regardless of the region, and exceeds that of men’s by an average of 5.4 years. In 2021, the average global fertility rate stood at 2.3 births per woman, falling from about 5 births per woman in 1950. It is projected to fall even further to 2.1 by the year 2050. Current demographic trends explain the projections for 2050. According to the report, policies already implemented in some countries to reduce the fertility rate will start to have a greater impact during the second half of the 21st century.
Demographic Trends with Robust Regional Differences
With 4.4 billion inhabitants, Asia accounts for 55% of the global population with China and India being its’ two most populous countries. By 2023 India’s population is projected to exceed that of China’s. More than half of the projected increase in the global population between 2022 and 2050 is expected to be concentrated in just eight countries: the Democratic Republic of the Congo (DRC), Egypt, Ethiopia, India, Nigeria, Pakistan, the Philippines and Tanzania. On the other hand, the report maintains that Europe and North America will begin experiencing population decline in the late 2030s, whereas the Chinese population is expected to decline as early as 2023. After years of imposing a coercive policy of low birth rates, the May 2021 announcement to provide government support for a third Chinese child is not expected to have much impact on declining growth rates. By 2050, the report estimates that populations will decline in as many as 61 countries, sometimes with high percentages. For example, Bulgaria, Lithuania or Serbia could experience losses of 20% or more.
A Demographic Winter to come for the West
For these countries, the UN forecast seems to confirm the so-called “demographic winter or collapse”. This means that at the end of the demographic transition, fertility rates will not stabilize with mortality rates, but rather continue their downward trend, leading to a higher percentage of elderly persons, which will ultimately result in an overall population decrease. The report predicts that 16% of the world’s population will be composed of over-65s compared to only 10% today, and that by 2050 they will be twice as numerous as children under 5. Various well-known people have addressed the subject of this demographic winter. Pope Francis, for example, has repeatedly expressed his concern about this phenomenon. And last spring, the multibillionaire Elon Musk tweeted that “the rapidly collapsing birth rate is by far the greatest threat to civilization.” The richest man on the planet believes he is “doing his part” since he is the father of nine children, according to the latest known information. His former girlfriend, singer Grimes, sought out a surrogate mother for their second child who was born last December, only weeks after the birth of twins that Elon Musk had with one of his employees, Shivon Zillis. A rather disjointed idea of fatherhood, to say the least.
Uncertain Population Forecasts for 2100
Finally, the report gives estimated forecasts for 2100, while underlining the inherent uncertainty in making predictions. A medium scenario is provided where the world’s population is between 8.9 and 12.4 billion. The report refers to the scenarios published in 2020 by the IHME (Institute of Health Metrics and Evaluation), an institute partially funded by the Bill and Melinda Gates Foundation, which forecast a peak population of 9.7 billion in 2064, followed by a decline to 8.8 billion (with a range of variation between 6.8 and 11.8 billion). The difference between these projections is mainly due to different fertility rates: 1.66 for the IHME and 1.84 for the UN. This type of forecast is notoriously tricky: in 1992, a UN report projected a population of 10 billion in 2050 (medium scenario).
Due caution is called for in view of the significant differences announced in these forecasts. National public authorities should be careful about the report’s call for reducing fertility in regions with high birth rates. A rather quantitative Malthusian vision is sometimes apparent when topics of growth or sustainable development are treated in the report. Nonetheless, some opposing viewpoints are being raised. Indeed, in a “JDD” newspaper interview, demographer Christophe Guilmoto asserts that “the real danger isn’t due to population growth, but rather to lifestyles”, because “thecarbon footprint in poor countries with the largest population growth is lower than their inferred demographic index, since these countries are the ones which pollute the least”.
And even more profoundly, as the 16th century philosopher and humanist, Jean Bodin emphasized: mankind is our only true source of wealth.
In the wake of the U.S. Supreme Court decision which overturned Roe vs. Wade, numerous intense debates on abortion have erupted in the United States and elsewhere. Abortion advocates, including the US Treasury Secretary, Janet Yellen, have asserted that restricting abortion will have a negative impact on the economy. Various media networks have reiterated these warnings, allegedly backed up by studies showing a causal link between abortion access and economic prosperity. Alliance VITA has examined these studies to check whether this claim and the resulting conclusions are reliable.
Is there a causal link between abortion access and the long-term economic well-being of women and children?
Janet Yellen’s assertions are mainly based on a brief written by 154 economists in September 2021 and submitted to the U.S. Supreme Court during the debates on the constitutionality of the Mississippi abortion law. The economists’ brief contends that the availability of abortion, when detached from other factors, “is causally linked to the ability of women to participate in economic and social life”. But although the causal link method, used to measure the impact of abortion legalization on the economic development of women, shows a link between abortion and demography, no causal link with the economy can be established, unless one considers low birth rates as a determining impetus for economic well-being.
In addition, an article published in 1996, based on economic data from 1960 demonstrated that legalizing abortion significantly affected the education levels and the employment rates for Black teenagers but not their wages. Abortion legalization had no impact whatsoever on White teenagers. In contrast, this study found a significant but unexplained link between legalizing abortion and an increase in wages for White men.
Many publications have regularly focused on how having a child penalizes a woman’s income level, her career and her participation in the labor market.
Nonetheless, the Treasury Secretary has neglected a crucial point which is the lack of federal assistance for mothers. Yet, as the Myers report points out, abortion could be prevented for poorer women if social policies were implemented to assist them with the financial costs of motherhood.
Is there a causal link between abortion access and children’s long-term economic well-being?
Regarding claims that children’s well-being is improved in states where abortion is not restricted, it turns out, that no causal link can be established between the jurisprudence established by Roe vs Wade and socio-economic markers. These findings are based on a study by the National Bureau of Economic Research (NBER) which measured poverty rates, recourse to social assistance, and school drop-out rates. The economic development for future generations appears to depend more on the different resources and assets between the various states rather than any differences in the states’ abortion legislations.
Is there a short-term economic impact when abortion is denied?
Studies, such as the well-known Turnaway Studies, provide data on the short-term economic impact of being denied an abortion in the second trimester of pregnancy. On average, this particular group of women who are being denied second-trimester abortions, (younger, less employable women with generally fewer children), are confronted with high financial expenses due to the new baby. In the United States, annual early childhood expenses average $ 11,000 per child. However, this higher expense is not for a long period of time. These short-term costs for raising children from newborns to age 3 is a relevant factor for all women caring for their children but its’ relevance is particularly emphasized by the fact that women undergoing very late-term abortions are notably less well-off financially compared to the general population.
Can the effects of some particular categories of abortion restrictions be extended to include all women who abort?
The economic studies presented have focused on specific and particularly vulnerable female populations such as adolescents, those requesting second trimester abortions, those in extremely precarious situations or Black women. But these specific categories do not give an accurate portrayal of women in the U.S. seeking abortion. Indeed, the typical American woman who has an abortion is far different from the aforementioned profiles which were used to project these dire economic consequences.
Alliance VITA’s spokesman Tugdual Derville declares: “The general conclusions from these studies, which allege that extending abortion access results in an economic benefit, are biased. The methods are questionable since they are based on sparce, fragmented data, which is not up to date, and derived from a non-homogeneous population. Any elements that don’t correspond to the stated narrative are excluded. In the United States, a more widespread utilitarian, liberal ideology prevails, which some might even qualify as being eugenic. Social programs in support of motherhood and families are either ignored or rejected, in order to discourage disadvantaged families from having too many children.”
To mark the 20th anniversary of the law instituting palliative care, on June 14, 2022, three Palliative Care Federations in Belgium from Walloon, Brussels and Flanders joined forces to explain what palliative care is , and also to warn about the lack of access to palliative care.
“Palliative care… is all about life! ».
Healthcare professionals have chosen this catch phrase in order to warn about preconceived ideas and bad images associated with palliative care in Belgium, especially since their objective is specifically to attend to patients’ needs as diligently as possible.
In a joint statement these Palliative Care Federations point out that “Almost 100,000 patients per year are eligible for palliative care, although many do not have access.” Already in 2020, the federal evaluation commission highlighted this issue in their report by stating that “The number of beds in palliative care units must be quickly increased to meet patients’ needs, location and accessibility. The report also specified the need for funding “to cover the current costs of healthcare staff and to meet the costs for the services provided.” The evaluation commission also recommended that funding be allocated for psychologist positions in palliative care units.
Professionals lament that not enough emphasis is placed on the possibility of early care, which would considerably improve the quality of life for both patients and their loved ones.
The conditions for receiving the “palliative care package” are scheduled to be updated in 2023 by the Federal Center of Expertise for Healthcare in Belgium. The End-of-Life Care Research Group and others are already requesting that this financial aid package be extended to patients with a life expectancy of more than 3 years. Currently, this financial assistance to help cover the cost that palliative patients incur at home, (medicines, healthcare equipment and medical devices) is only granted under certain conditions, including:
have an incurable disease;
suffer a severely deteriorating physical or psychological condition;
have a condition that no therapy can improve;
have a life expectancy of less than 3 months;
have physical, social and spiritual needs which require committing to a very elaborate set up;
express a wish to die at home;
and meet the conditions set out in the application form, known as “Medical Advice”.
The extension beyond three months would contribute to the quality of life for both the patient and his entourage, and consequently contribute to improving the current state of palliative care being provided.
“Hospitals often transfer patients to palliative care units when they can no longer do anything to cure the patient since they consider euthanasia to be a palliative care option, when, in my opinion, it is completely the opposite,” stated a caregiver in the book “Euthanasia, Behind the Scenes”, (Mols editions, published in 2019).
It would be interesting to survey the public and the caregivers in Belgium on how the legalization of euthanasia has affected the image of palliative care and how this may be creating confusion.
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