Community priorities for programs using HIV molecular epidemiology: A best-worst scaling
Abstract
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.
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Authors: Anne L. R. Schuster, Juli Bollinger, Travis Sanchez, Jeremy Sugarman, John FP Bridges
Institutions: Johns Hopkins University, The Ohio State University Wexner Medical Center, Emory University, Johns Hopkins Medicine, Johns Hopkins Berman Institute of Bioethics