Risks, concerns, and benefits of molecular HIV Epidemiology in Public Health Practice: A qualitative exploration of perspectives among affected and interested communities.

Background: In the United States, HIV surveillance is a critical component of the National HIV/AIDS Strategy which includes evaluating HIV sequences for molecular HIV epidemiology (MHE). With MHE, HIV sequences that are generated from clinical drug resistance tests are reported to health departments and analyzed for outbreak detection.

Design and methods: We conducted a qualitative study guided by a social ecological framework to identify perspectives on risks, concerns, and perceived benefits of MHE among communities affected by HIV and surveillance policies. From 2020 to 2021, we interviewed 41 participants from five participant groups: public health leaders/staff, HIV advocates/Community Based Organization (CBO) leaders, people living with HIV (PLWH), ethicists, and HIV care providers. We conducted a thematic analysis of the interview data, identifying key perceived risks, concerns, and benefits related to MHE.

Results: Our analysis revealed that while MHE was largely viewed as beneficial across groups (including PLWH and HIV advocates/CBO leaders), significant risks, concerns, and uncertainties continue to be associated with the approach, including privacy and confidentiality issues, adverse impacts on HIV testing and care, and potential for criminalization and stigmatization of PLWH.

Conclusions: These findings demonstrate the ongoing need for meaningful community engagement and ongoing qualitative research on the practice of MHE among different community groups and social contexts to ensure the responsible use of this new surveillance tool.