Anne Lr Schuster, Juli Bollinger, Travis Sanchez, Jeremy Sugarman, John Fp Bridges
Community support is broad for HIV-ME uses, particularly with protections for data privacy, access, and use.
BACKGROUND: HIV molecular epidemiology (HIV-ME) uses genetic sequencing to study viral evolution, detect transmission clusters, and guide public health responses. Ethical, legal, and social implications of HIV-ME have been raised, yet quantitative evidence on community perspectives remains limited. We quantified community priorities for HIV-ME program features and examined their heterogeneity.
METHODS: Adult cisgender men who have sex with men, including people living with HIV (PLWH), were recruited from the 2023-2024 American Men's Internet Survey. Best-worst scaling assessed the importance of 11 HIV-ME features across 11 choice tasks using a Youden experimental design. Aggregate results were estimated using conditional logit models and rescaled to importance scores summing to 100%. Heterogeneity in priorities was assessed using stratified models and latent class analysis.
RESULTS: Among 747 people who completed the survey, 18% were PLWH, 35% were under 40, 34% reported concern about stigma, and 38% resided in states with active HIV criminalization statutes. "Ensuring privacy" was the most important feature, followed by HIV-ME uses for cluster detection and response, studying viral evolution, and evaluating prevention. Priorities did not differ when stratified by HIV status (p<0.01). Two latent classes emerged: a larger "Use the Data" group (n=472, 63%) placed 64% of importance on HIV-ME uses, and a smaller 'Protect the Data' group (n=275, 37%) placed 26% of importance on HIV-ME uses and 64% on: ensuring privacy, obtaining permission for and providing disclosure about data use, and limiting law-enforcement access.
CONCLUSIONS: Community support is broad for HIV-ME uses, particularly with protections for data privacy, access, and use.