Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions.

Gene-editing technologies have improved in ease, efficiency, and precision. Although discussions are occurring around acceptable uses of human gene editing, limited data exist on the views of genetics-trained individuals. In 2017, we distributed an anonymous online survey to assess the attitudes of members of genetics professional societies toward gene editing (N = 500). Virtually all respondents were supportive of somatic editing in basicscience (99.2%) and clinical (87.4%) research on nonreproductive human cells. Only 57.2% were supportive of germline-editing basic-science research; 31.9% supported the transfer of viable embryos to humans for clinical research. While most favored future therapeutic uses of somatic (96.6%) and germline (77.8%) editing, there was little support for enhancement in somatic (13.0%) or germline (8.6%) cells. This study describes attitudes toward gene editing from genetics professionals worldwide and contributes to ongoing discourse and policy guidance in this domain.