Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data

Abstract

Introduction The widespread implementation of molecular HIV surveillance (MHS) has resulted in an 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 and summarize the key lessons we learned through conversations with community members. Methods The original study aimed to describe HIV transmission patterns by age and race/ethnicity among men who have sex with men in King County, Washington, by applying probabilistic phylodynamic modelling methods to HIV‐1 pol gene sequences collected through MHS. In September 2020, we paused the publication of this research to conduct community engagement: we held two public‐facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback on our manuscript. During each of these meetings, we shared a brief presentation of our methods and findings and explicitly solicited feedback on the perceived public health benefit and potential harm of our analyses and results. Results Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, inference of transmission directionality and criminalization. Other critiques were specific to our research study 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—perpetuating racialized stigma about men who have sex with men and eroding the trust between phylogenetics researchers and communities of people living with HIV—outweighed the potential benefits. Conclusions HIV phylogenetics research using data collected through MHS data is a powerful scientific technology with the potential to benefit and harm communities of people living with HIV. Addressing criminalization and including people living with HIV in decision‐making processes have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice. We close with specific opportunities for action and advocacy by researchers.

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

“…Aspects of these issues have also been explored through scholarly publics, mainly in the fields of bioethics, surveillance studies, and critical public health (Bollinger et al, 2023;Buchbinder et al, 2022;Molldrem et al, 2023b;Shook et al, 2021). Our analysis highlights that meaningfully engaging people living with HIV should be central in planning and implementing new and ongoing approaches in HIV prevention and surveillance (Bernard et al, 2020;HIV Justice Network & Positive Women's Network, 2020;Tordoff et al, 2023). However, 'meaningful engagement' cannot be tokenistic, and is necessarily a question of who gets to enact programs, shape policy, and drive knowledge production (Smith et al, 2023;Spieldenner et al, 2022).…”

“…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.…”

Community voices and whole genome sequencing for tuberculosis: storytelling and the importance of listening

“…This contrasts with characteristics of other infectious diseases such as HIV where work on use of genomic data for inferring transmission is extant [32]. Recognition of potential harms from HIV genomics has led already to the development of models of community engagement for public health application [33]. While careful consideration of the structures best placed for community engagement in TB WGS and the public health response is required, the characteristics of TB also mean that there are important potential opportunities to improve treatment, prevent disease, and support communities in real time [34].…”

Community engagement tools in HIV/STI prevention research

“…For example, A research team from the University of Washington conducted preliminary online presentations of their research findings utilizing molecular HIV surveillance (MHS) data prior to formal publication, in order to solicit input from both the community of PLHIV regarding the release of analytical outcomes derived from HIV-related genetic data. By facilitating direct dialogues with the community and affording them the platform to articulate their concerns, the researchers were able to recognize the potential ramifications of disseminating their study results, such as potential perpetuation of racialized stigma within the MSM population and the erosion of trust between the research community and PLHIV [45]. It is noteworthy that hybrid approaches, combining both digital and in-person engagement efforts, can optimize the inclusion of community members with diverse backgrounds and varying needs [31].…”