Poster ID
P-29
Poster Title
Insurer Use of Genetic Information: A Scoping Review of Regulatory Designs across 32 Jurisdictions
Authors
Jeanette Yuen1,2, Stephanie Alsay1, Suphasan Tangtokit1, Jerry Jaffar1, Jon Emery2, Julian Savulescu3, Konstadina Griva2, Joanne Ngeow1,2
1 Division of Medical Oncology, Cancer Genetics Service, National Cancer Centre Singapore
2 Lee Kong Chian School of Medicine, Nanyang Technological University
3 Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
1 Division of Medical Oncology, Cancer Genetics Service, National Cancer Centre Singapore
2 Lee Kong Chian School of Medicine, Nanyang Technological University
3 Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
Abstract
Population genomics programmes depend on public willingness to undergo genetic testing, yet fear of genetic information misuse by insurers remains a persistent barrier to uptake. Regulatory approaches vary internationally from binding legislation to voluntary moratoria, but no prior review has synthesised their design features, enforcement provisions, and downstream effects on testing behaviour. We conducted a PRISMA-ScR scoping review, identifying 90 studies across 32 jurisdictions. Fear of discrimination, rather than documented incidence, emerged as the primary public health harm: 28 of 34 studies (82%) directly testing the relationship found that fear persisted regardless of awareness of existing protections. Three structural weaknesses recurred across regulatory mechanisms irrespective of binding status: industry self-administration, absence of independent enforcement, and exclusion of family history from scope. Frameworks most associated with adequate protection combined explicit family history coverage, scope across insurance types relevant to genetic risk management, independent enforcement, and periodic review responsive to advances in genomic science. Singapore's current moratorium shares structural features with the voluntary mechanisms Canada and Australia operated before each transitioned to binding legislation. As national programmes scale genetic testing to population level, our findings provide an evidence base for regulatory design that can address the fear-driven barriers limiting the benefits of precision medicine for public health.
Digital Poster