Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented Privacy Law, and Human Rights Risks as Central Participant Concerns.

This paper presents results from a key informant survey exploring ethical, legal, and social issues (ELSI) as perceived by professionals working in the U.S.-based private sector human genomics industry. Drawing on a structured survey of 111 participants-including researchers, executives, policy leads, and communications specialists-this study examines how industry insiders assess emerging ethical concerns across domains such as data privacy, race and ancestry, sociogenomics, commercialization, and government partnerships. The survey instrument was developed based on a prior interview phase and reflects concerns raised directly by professionals in the field. Quantitative responses were analysed for levels of concern and consensus, while open-text responses provided further insight into areas of divergence and organizational context. Respondents expressed high concern and consensus about lack of diversity in datasets, fragmented privacy regulation, and potential genomics collaborations with governments implicated in human rights abuses, though significant disagreement emerged around the appropriate use of race categories and socio-genomic applications. This preliminary exploration offers a glimpse into perspectives from a difficult sample population, and suggests entry points for future collaboration, policy, and critical scholarship.