United States government initiatives to engage community stakeholders in developing Molecular HIV Surveillance/Cluster Detection and Response Interventions: A scoping literature review. (Preprint)
Authors: Garcia Moctezuma , Sen Soma , Zepeda Jorge , Vargas Steven , Fuchs Jonathan D. , Drabble Laurie 
Published: February 2025

BACKGROUND

In the US, the Center for Disease Control (CDC) has mandated that health departments receiving Ending the HIV Epidemic (EHE) funds use genetic sequences collected through Molecular HIV Surveillance (MHS) to monitor for and respond to HIV molecular clusters, also referred to as Cluster Detection Response (CDR). Public health agencies use MHS/CDR for drug resistance monitoring, detection of outbreaks, and enhanced understanding of transmission networks. However, several ethical and human rights concerns with MHS/CDR have been raised, such as insufficient individual consent to participate, failure to respect autonomy, lack of community consultation, stigmatization of highly marginalized communities, HIV criminalization, privacy, and data protection. Meaningful engagement of communities impacted by the HIV epidemic and policies designed to facilitate access to treatment may help inform effective MHS/CDR implementation and address stigma and other well-documented deterrents to HIV prevention and intervention.

OBJECTIVE

This scoping literature review summarizes community-based efforts in the development and implementation of MHS as a tool for CDR interventions to enhance access to HIV-related services (e.g., HIV testing, PrEP, Treatment as Prevention) for underserved populations in the US.

METHODS

Using PRISMA guidelines, we searched several databases (Google Scholar, Scopus, PubMed, and PsycInfo) to identify both peer-reviewed and grey literature English language publications that focused on MHS/CDR, and community engagement related to MHS/CDR, in the U.S.

RESULTS

In general, there is a paucity of research focusing on the engagement of local stakeholders in the development and implementation of MHS/CDR activities. Among the 24 articles identified through the scoping review process, approximately one-half were published in peer-reviewed journals and others were grey literature (e.g., reports and conference presentations). Literature to date generally highlighted several areas of community concern. First, questions have been raised about the evidence of its efficacy in reducing HIV transmission, implementation issues such as inconsistency in administering drug resistance tests in medical practice, barriers to uptake of partner services, and its cost-effectiveness. Second, several articles noted concerns about a lack of transparency and informed consent in how HIV genetic data are used for MHS/CDR and research activities outside of its intended purpose to monitor HIV drug resistance. Third, articles highlighted concerns about MHS/CDR investigation among highly marginalized populations. Fourth, articles emphasized that inadequate representation and meaningful engagement of community stakeholders undermine efforts to address key concerns about privacy, informed consent, HIV criminalization, and immigration issues.

CONCLUSIONS

Findings underscore the importance of initiating and evaluating strategies for meaningful community engagement in all phases of MHS/CDR activities. Future research should explore implications of structural racism and meaningful engagement of diverse members from the community to develop culturally and linguistically appropriate MHS/CDR interventions for diverse populations.