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L’utilité de ce genre d’institutions est incontestable. Car le monde moderne est sans cesse confronté à des innovations, médicales ou autres, qui s’appliquent à l’homme ou à son environnement proche. Ce lieu est donc nécessaire pour préparer la matière intellectuelle qui sera ensuite transférée aux citoyens afin que ceux- ci puissent se prononcer quant à la légitimité de ces innovations.

 

Professeur Axel Kahn, le célèbre généticien français, lors de l’inauguration de la Fondation Brocher

 

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14 - 16 janvier 2020

Experimenting on Future Children: Gene Editing in Human Reproduction

Organisateurs:

In late 2018, a Chinese scientist shocked the scientific and bioethics communities by announcing the birth of twin babies, on whom he claimed he had used the CRISPR Cas-9 technique to alter their genomes as early embryos. This announcement marked a turning point in discussions of the ethics of using gene editing techniques in human reproduction, in that it was the first time in the world that gene edited embryos were implanted in a woman in the hope of a live birth. This is notable for two reasons.

First, the use of CRISPR-Cas9 in the twins was widely condemned as scientifically premature and medically unnecessary. Concerns were also raised about whether appropriately informed consent was obtained and the robustness of plans for future monitoring of the health and wellbeing of the children. Even so, there was little discussion about whether it was intrinsically morally wrong to edit the genomes of humans. This was consistent with an increasingly widely accepted view that genome editing in human reproduction may be morally permissible if it meets certain conditions. In just a few years, there has been a shift in ethical discourse from the view that inheritable genome editing marked a bright line that ought not be crossed to ethical acceptance of the conditional permissibility of it. What changed and why?

Second, as with other first clinical uses of new reproductive technologies, the use of CRISPR-Cas9 in this case was essentially experimental: it is not yet clear that gene editing is safe or effective and, in the context of reproduction, it is impossible to show that via clinical trials before application. However, the pressure on scientists to innovate and commercialize research, and the often strong desire of prospective parents to have a genetically related child, converge to encourage early application of new techniques and technologies in assisted reproduction services.

This workshop focuses on the implications of scientific innovation systems for human reproduction, especially in regards to the early adopters of new technologies – increasingly, we see a dynamic whereby significant ethical concerns are raised about a technology, but these are set aside by frontrunner scientists and clinicians working with prospective parents who seek to use a new technique in order to achieve their reproductive goals well before there is consensus on safety, clinical protocols and ongoing risk management. The ethical and regulatory discussions must then adapt to the new reality.

As detailed in the attached proposal, this workshop will address important and previously unresolved ethical issues raised by breakthroughs in the science and medicine of human reproduction and the role of early adopters in shaping the ethics and regulation of new technologies. We focus our discussion of these issues on the prospects of genome editing of human beings.