Lessons Learned from Community Engagement Regarding Phylodynamic Research with Molecular HIV Surveillance Data

Abstract

The widespread implementation of molecular HIV surveillance (MHS) has resulted in increased discussion about the ethical, human rights, and public health implications of MHS. We narrate our process of pausing our research that uses data collected through MHS in response to these growing concerns, summarize the original study, and key lessons we learned through conversations with community members. Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, directionality, criminalization, and communicating results. Other critiques were specific to our research, and included feedback about the use of phylogenetic analyses to study assortativity by race/ethnicity and the importance of considering the broader context of stigma and structural racism. We ultimately decided the potential harms of publishing our study–including perpetuating racialized stigma about/among MSM and eroding the trust between phylogenetics researchers and communities of PLHIV–outweighed the potential benefits. Addressing criminalization, including PLHIV in decision-making processes, and increasing transparency have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice.

Health policy counterpublics: Enacting collective resistances to US molecular HIV surveillance and cluster detection and response programs

“…We focused on how this health policy counterpublic was enacted, and also the specific areas of controversy that emerged as matters of concern. These issues persist; since our interviews in 2021, there have been significant developments stemming from the actions of the MHS/CDR health policy counterpublic, including researchers pausing and then stopping a US National Institutes of Health-funded MHS study after consulting with communities (Tordoff et al, 2023), the previously-discussed October 2022 resolution from PACHA (PACHA, 2022), followed by a response directly from the White House Office of National AIDS Policy (ONAP) (Phillips, 2023). The MHS/CDR counterpublic has demonstrably affected the trajectory of US HIV/AIDS policy.…”

Ending the HIV Epidemic: Identifying Barriers and Facilitators to Implement Molecular HIV Surveillance to Develop Real-Time Cluster Detection and Response Interventions for Local Communities

“…A more standardized approach will be crucial for effectively scaling out CDR and achieving a public health benefit for EHE. However, this may not be achievable until community concerns are sufficiently addressed, as some research has been paused or halted as a result [ 31 ]. Further, incorporating necessary services that address community needs into CDR interventions will be imperative for building trust.…”

Molecular Epidemiology of HIV-1 Subtype B Infection across Florida Reveals Few Large Superclusters with Metropolitan Origin

“…When performing our analyses, we considered the ethical discussions recently raised by Tordoff et al ( 30 ), including the inference of transmission directionality among individuals and vulnerable populations, and assortativity of transmission categories. To this effect, our analyses were careful not to infer any individual- or demographic (age, gender, and race/ethnicity) group-level transmission directionality and we exclusively reported virus flow across large geographic regions (i.e., counties) rather than individual groups.…”