Addressing the Ethical Dilemmas of Heritable Human Genome Editing by Incorporating the Perspectives from the Disability Community in Public Policy

Abstract: The National Council on Disability released a report "From Fetal Surgery to Gene Editing: The Current and Potential Impact of Prenatal Interventions on People with Disabilities" in June 2024 which made public health and policy recommendations about the use of heritable human genome editing and other prenatal technologies. NCD utilized interdisciplinary input from leaders in the disability, medical, and bioethics communities. Notably, disabilities advocates have criticized the ethical violations of procedural justice and respect for relational individual and community solidarity given that people with disabilities have not been sufficiently included in the International Summit on Human Gene Editing held by the National Academy of Sciences and the National Academy of Medicine. Other concerns focus on non-malfeasance given the instability of the technology, the autonomy of and consent children and future generations in making decisions about their genetic makeup with unknowable risks, distributive justice with making expensive technologies to everyone if found beneficial, and security and privacy in a world where genetic information continues to expand in availability. In this presentation, participants and leaders in the development of the report will describe how the methodology incorporated feedback from the disability community through extensive listening sessions, online community conversations, and qualitative semi-structured interview with a range of bioethics, medical, and disability advocacy leaders. Then, we will explore the ethical issues identified and the recommended public policy interventions to address those ethical issues

Keywords: heritable human genome editing, prenatal, disability