ArticlePloS one2025
Consent in the practice of molecular HIV epidemiology: A qualitative study of the perspectives of diverse communities of interest.
Article in PloS one, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Social network isolation and cohesion and their association with HIV clustering among Black and Latino sexual minority men: implications for public health strategy.Scientific reports · 2026Article
- No Integration Without Preparation: Building Workforce Capacity for Partner Services and HIV Molecular Epidemiology.Open forum infectious diseases · 2026Article
Corrections and comments
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Authors and funding
5 authors.
Funding
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Abstract
backgroundThe practice of using molecular HIV epidemiology (MHE) to enhance surveillance activities has generated much discussion, partly because it typically involves sequencing viral samples from persons living with HIV without their knowledge or consent.
methodsUsing individual, semi-structured in-depth interviews, we asked 41 individuals from a range of groups affected and/or involved in MHE and related health services in North Carolina their views about consent and MHE.
findingsAlthough there was no unanimity of opinion, our interview participants were largely (82.5%) supportive using MHE for public health surveillance without obtaining consent, including those living with HIV, though there was also broad support across groups for raising public awareness about MHE. The reasons against consent for MHE included: consent is not traditionally solicited or required in other medical or public health surveillance activities; consent for MHE could deter people from getting tested or entering care; refusals could diminish the accuracy and utility of MHE data due to the resulting evidence gaps; and consent is impractical when there is an urgent need for data during disease outbreaks. Reasons in favor of consent included: a sample is something personal for which it is appropriate to ask permission for its use; failure to ask for consent is an unjustified curtailment of personal rights; people should be able to choose what information related to themselves that they share or do not share with others. There were also mixed responses, where the appropriateness of asking for consent depended on certain conditions.
conclusionThese study findings reveal some support among communities of interest for the current approach to consent along with a need for greater community awareness of MHE, and contribute to the ongoing policy conversation about whether the current practice of not obtaining consent for MHE and HIV surveillance purposes should be revisited.
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