The Ethics of Gene Editing: Should Concerns Beyond Safety Matter in Science Policy?

Gene Editing: Science and Policy Implications CRISPR-Cas9 greatly enhances the ease and affordability of gene editing. It is already being used to modify animals and plants and to produce human therapeutics, and it has reignited debate about modifying the human germline. It may also lead to novel genetically modified organisms intended for uncontained environmental release. Modifying organisms and making permanent changes to the human germline raise a range of social and ethical implications. Yet, with rare exceptions, public commissions and regulatory bodies tend to focus only on safety and efficacy, particularly in pluralistic societies where consensus on ethical issues is unlikely. Drawing on analyses from several national and international efforts, including those led by the National Academies of Science, Engineering, and Medicine and the Hastings Center, this session considers several nonsafety issues raised by gene editing. Examples include potential impacts on “human dignity,” a concept that appears in some European regulations but is often dismissed as irrelevant in U.S. policymaking, as well as disability rights, which some scholars argue are threatened by attempts to eradicate disability from the gene pool. Other ethical issues include whether the technology will disrupt the relationship between humans and nature and between parents and children. This session explores these nonsafety ethical issues and considers whether they should be included more robustly in science policy and, if so, how.