Human Genome Editing: Science, Ethics, and Governance

The National Academies of Sciences and Medicine convened a committee to summarize the important considerations for the future of human gene editing, including both somatic and germline editing. They lump these considerations into three categories: the scientific, the medical, and the ethical. They note that public engagement is especially important in the case of germline editing. The authors lean toward a conservative approach to research governance, arguing that current norms and frameworks are effective and can serve as examples for the governance of new gene-editing research and clinical applications. Their approach to somatic gene therapies broadly dismisses the idea that they may be of public concern, arguing that their “scientific and technical, ethical, and regulatory issues… concern only the individual” (2017:6). On the other hand, they acknowledge that germline editing “would cross a line many have viewed as ethically inviolable” (2017:7). Even so, the committee recommends permitting such editing in cases of serious heritable disease, provided proper mechanisms of risk/benefit analysis and “broad public input” (2017:7). Their framework for characterizing the key ethical considerations of such research is also highly individualized, highlighting parental and personal autonomy as key concerns. The committee solicited review comments from Observatory Co-Directors Ben Hurlbut and Kris Saha.