Mazique, Rachel and Elizabeth Ayers (2024-2028). Eliminating Genes that Cause Deafness: Ethical, Legal, and Social Implications. Grant proposal submitted to PAR-25-370: Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03 Clinical Trial Optional), National Institutes of Health (NIH). ≠
Advances in genomic medicine targeting deafness, such as gene editing and genetic therapy, raise complex questions about the ethical, legal, and social implications of intervention, and their governance. This empirical bioethics study will examine the beliefs, attitudes and perspectives of three stakeholder groups–deaf individuals, their hearing family members, as well as healthcare and genetics professionals–regarding the potential benefits and drawbacks of these genomic technologies. Normative bioethical analysis of results will support ethical decision-making, inform future genomic practice and research, and impact public health policy.