What Should We Do About Human Gene Editing?

Policies governing heritable genetic modification in different jurisdictions differ in important respects. As the science is the same, the differences in policy presumably reflect differences in ethical values. This is potentially concerning insofar as the human genome arguably belongs to us all, not just some elite(s). In recent years there has been a concerted effort to (at least nominally) include scientists and ethicists in conversations that might inform policy directions. Interestingly, these efforts have fueled calls to broaden these conversations. Consider, for example, the list of nominated participants in future global discussions of gene editing generated at the December 2015 International Summit on Human Gene Editing: “The forum should be inclusive among nations and engage a wide range of perspectives and expertise – including from biomedical scientists, social scientists, ethicists, health care providers, patients and their families, people with disabilities, policymakers, regulators, research funders, faith leaders, public interest advocates, industry representatives, and members of the general public.” This talk will explore differences in genetic engineering policies and practices. It will consider how discussions of the presumed biomedical “goods” associated with saving or improving lives have shaped debates differently in different social contexts resulting in different policy considerations. The presentation will end with some reflections on possible ways forward in developing sound policy options for stopping, slowing, or advancing the science of heritable genetic modification.