On March 3, 2020, the French National Consultative Committee on Ethics (“CCNE”) published the “Ethical Challenges of Gene Editing: Between Hope and Caution”. The members had unanimously adopted these recommendations on September 19, 2019.
This statement referred to as “Opinion 133” deals with the ethical dilemmas of modifying DNA in living organisms, plants, and animals, but especially in humans, and focuses on editing human germ cells (from human embryos or gametes) to create genetically-modified babies.
In the context of heritable gene editing, the committee declares: “Too many technical and scientific doubts have yet to be clarified”.
Therefore, the “CCNE” insists that due these unknown long-term effects, an international moratorium is necessary, which would take precedence over any French legislation, prior to implementing any of these applications.
The “CCNE” also advocates a large public awareness campaign and an ethical debate. “To accept the idea that everything could be regulated by means of a tool of governance or dialogue would assume that the technique is neutral with respect to its object (…). In the first instance this is a cultural problem, a choice of civilization for our societies.”
The CCNE emphasizes that societal and cultural issues are involved, especially for the unborn child who gives no consent, and who may file a “grievance” for being born “modified”.
The choice between the individual’s benefit (eliminating disease or handicap) compared to the collective risk (risk of social transgression, refusal of “differences” is complex). Indeed, it is vital to investigate on the danger of genetic standardization. What would it mean to live in a world where differences such as disabilities or even specific personality traits are labeled “unacceptable or undesirable”?
The report also alerts on the fact that this technology is likely to generate unrealistic expectations that cannot be met.
Although the “CCNE” calls for an international moratorium, it does not rule out specific genome repair in the future, but calls for specific ethical examinations for these applications which may lead to developing new medical procedures.
Regarding 3-parent IVF, which raises several identical issues, and which has already resulted in births in several countries, despite the precautionary principle, the “CCNE” concludes that it can be qualified as a treatment for the disease and is not eugenics.
Lastly, the report states that gene editing is closely linked to other issues such as: “the development of organoids from pluripotent stem cells, synthetic gametes, and human organs in animal chimeras”. The pending bioethics bill in France also addresses these topics.
Alliance VITA, who had previously launched its’ No GM Babies campaign in 2016, states that this current report clarifies many of the risks and ethical issues inherent in performing heritable genome editing on human embryos and gametes, in order to give birth to genetically modified children.
By requesting an international moratorium, France is heading in the right direction, calling for prudence and responsibility, especially when the current revision of the bioethics law could abolish the ban on creating transgenic embryos for research purposes.
Nonetheless, some important issues have not been addressed, including the use of human embryos as research material. Since clinical trials must be preceded by research stages, how many embryos will be required for basic research? If there is a shortage of supernumerary embryos, will the ban on creating embryos for research also be lifted? Furthermore, the fact that each embryo is unique, and therefore impossible to completely control, is not addressed. The human embryo, thus created, is the guinea pig of these questionable techniques, which transformed it.
Finally, on the subject of how to treat embryos just after fertilization, this implies deliberately conceiving an embryo with a disease which would need to be treated. Embryos are obtained by IVF, to deliberately create these embryos with defects that hereditary genetic editing is supposed to repair. Isn’t it curious that medicine is creating its own patients, without any promise of treatment, and without any guarantee against unexpected risks being inherited by future generations?