Perceptions of Polygenic Scores for Medical and Social Traits Among Biobank Participants and the Public

Abstract

Introduction:

Polygenic scores (PGS) are used to investigate genetic predispositions for both medical and social traits. Their expanding application raises complex questions about data governance, societal impact, and research boundaries, particularly for biobank administrators who serve as custodians of the data enabling PGS research. Understanding the perspectives of biobank participants and the public on the development and use of PGS is essential for ensuring that governance and research practices align with participant values and societal norms.

Methods:

We surveyed participants from one biobank (n = 434) and members of the public (n = 1090) to assess perceptions of PGS research, with attention to differences by trait type (medical vs. social) and respondent category (biobank vs. public). Respondents received a brief explanation of PGS and examples of a medical and social trait. Using logistic regression models adjusted for sociodemographic and attitudinal variables, we examined support for PGS research, belief in its societal benefit, and comfort with personal data being used to develop PGS.

Results:

Trust in scientists was the strongest and most consistent predictor across all outcomes and respondent groups. The largest effect sizes appeared in attitudes toward PGS research on medical traits, with biobank participants showing an odds ratio (OR) of 3.26 (95% CI: 1.61–6.57) and public participants an OR of 4.60 (95% CI: 3.49–6.88). Biobank participants expressed greater endorsement of PGS for medical traits than public respondents, but both groups showed significantly less favorable views toward PGS for social traits.

Discussion:

Findings suggest that both groups, but especially biobank participants, hold clear reservations about applying genetic data to social outcomes. As biobanks increasingly support research beyond improving health outcomes, these results underscore the importance of transparent communication and participant engagement. Governance strategies must evolve alongside societal expectations to maintain public trust.