Human genome modification: European Group on Ethics calls for moratorium and public debate
Following the International Bioethics Committee for UNESCO calling for a moratorium on the DNA editing techniques on human embryos and human reproductive cells in October 2015, the European Group on Ethics in Science and New Technologies (EGE)* published a report on genome modification which underlines the severity of the issues and requests political awareness and civilian public’s implication on this subject.
The EGE is an independent advisory body, reporting to the President of the European Commission, composed of 15 experts appointed by the European Commission. The group has the role of examining ethical issues related to Science and New Technologies and based on their studies, to submit their advice to the European Commission to elaborate legislation or implement community policies.
The report first underlines three major changes which explain the urgency for a debate today:
- the enormous progress which has taken place these past 40 years, since the Asilomar conference in 1975;
- legalization of the « IVF-3 parents » in the United Kingdom, a technique aiming to replace the mitochondrial DNA of a woman by that of another (the ovule donor);
- The announcement in April 2015 of human genome modification performed by a Chinese team performing using the CRISPR-cas9 technique on human embryos.
After having reminded that gene modification of stem cells is only at its’ beginnings, and that there are yet a certain number of serious obstacles to be overcome before clinical applications are contemplated, the EGE underlines that the issue of its acceptability by the public remains to be determined.
The main and urgent question for politicians to address is to know whether research for stem cell genome editing techniques should be suspended or under which conditions could they continue.
The EGE believes that the considerations and deliberations on these techniques call for debates which should not be left to only a few countries or a few social groups or specialized fields, but should include public society whereby several viewpoints and expert opinions could be heard. The EGE warns against reducing the debate to security issues or potential health risks or only to the beneficiaries of this technology: other ethical principles such as human dignity, justice, equity, the proportionality and autonomy are clearly at stake and should be included in this reflection which is necessary to achieve a international governance for gene editing.
The EGE hopes that ethical considerations regarding all gene editing applications will be addressed, including those not performed on humans, since it is likely that a number of practical applications of gene editing will be made in the environmental sphere and will have important implications for the biosphere.
According to the EGE, a moratorium is needed on the transformation of human gene embryos and gametes, which leads to modifying the human genome. Should a distinction be made between basic fundamental research and that for clinical applications, since the boundaries between the two approaches are vague and sometimes tenuous? Members of the EGE have diverging standpoints; some desire a complete moratorium by referring to article 3 of the Charter for Fundamental Rights of the European Union, others do not wish to forbid fundamental research. This is the reason for calling for a larger public debate.
The EGE strongly recommends for the European Commission to demand from the group who will be appointed to succeed the current EGE group that they urgently address these ethical, scientific and legislative problems.
This new report from a European Union organization confirms the importance of a public debate and reflection on guidelines for genome editing research. Alliance VITA had also launched an appeal to the CCNE last January asking for this issue to be addressed.
*Since created in 1991, the EGE provides the Commission with advice on specific ethical aspects on science and new technologies. Its members are experts drawn from fields such as natural and social science, philosophy, ethics and law. The EGE assumes several roles: that of General Secretary of “the European Commission’s International Dialogue on Bioethics” – a platform bringing together the National Ethics Councils from 97 countries (EU-G20 forum and beyond) –is in charge of representation and correspondence with the international organizations tasked with examining the ethical implications of science and new technologies (UN and its agencies, OECD, Council of Europe) as well as coordinating Commission activities in the fields of bioethics and ethics of science and new technologies.
- Toute personne a droit à son intégrité physique et mentale.
- Dans le cadre de la médecine et de la biologie, doivent notamment être respectés :
- Le consentement libre et éclairé de la personne concernée, selon les modalités définies par la loi ;
- L’interdiction des pratiques eugéniques, notamment celles qui ont pour but la sélection des personnes ;
- L’interdiction de faire du corps humain et de ses parties, en tant que tels, une source de profit ;
L’interdiction du clonage reproductif des êtres humains.
For further information:
Article 3 of the Charter for Fundamental Rights of the European Union:
Right to the integrity of the person.
- Everyone has the right to respect for his or her physical and mental integrity.
- In the fields of medicine and biology, the following must be respected in particular:
- The free and informed consent of the person concerned, according to the procedures laid down by law;
- The prohibition of eugenic practices, in particular those aiming at the selection of persons;
- The prohibition on making the human body and its parts as such a source of financial gain;
- The prohibition of the reproductive cloning of human beings.