Community and Provider Perspectives on Molecular HIV Surveillance and Cluster Detection and Response for HIV Prevention: Qualitative Findings From King County, Washington

Abstract

Responding quickly to HIV outbreaks is one of four pillars of the U.S. Ending the HIV Epidemic (EHE) initiative. Inclusion of cluster detection and response in the fourth pillar of EHE has led to public discussion concerning bioethical implications of cluster detection and response and molecular HIV surveillance (MHS) among public health authorities, researchers, and community members. This study reports on findings from a qualitative analysis of interviews with community members and providers regarding their knowledge and perspectives of MHS. We identified five key themes: (a) context matters, (b) making sense of MHS, (c) messaging, equity, and resource prioritization, (d) operationalizing confidentiality, and (e) stigma, vulnerability, and power. Inclusion of community perspectives in generating innovative approaches that address bioethical concerns related to the use of MHS data is integral to ensure that widely accessible information about the use of these data is available to a diversity of community members and providers.

Brief Report: Challenges in Obtaining the Informed Perspectives of Stakeholders Regarding HIV Molecular Epidemiology

“…Further complicating these efforts is the conflation between concerns about HIV-ME and concerns about HIV surveillance generally. 20…”

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

“…Since its inception, MHS has been fraught with objections and ethical concerns from community members due to a lack of transparency and consent to use phylogenetic data for CDR; its potential for use in establishing the directionality of transmission; and possible criminalization, the potential loss of privacy, and the perpetuation of stigma in already marginalized communities [ 17 , 28 ]. Researchers indicated that community and provider concerns remained despite taking a transparent and proactive approach involving the dissemination of MHS-related information to the Ryan White Planning Council, sharing information on its website, and alerting community members to clusters with multidrug-resistant HIV [ 17 ]. Our research findings for Theme 5 demonstrate that these concerns also impact public health professionals carrying out CDR, with this being a prominent concern expressed by our research participants.…”

“…Our research findings for Theme 5 demonstrate that these concerns also impact public health professionals carrying out CDR, with this being a prominent concern expressed by our research participants. Community engagement around MHS-related activities has largely been left to individual health departments, but a centralized approach to disseminating MHS-related information and promoting equitable community engagement to all stakeholders may be beneficial, including those within the field of public health [ 17 ]. Approaches that center on meaningful community involvement will be crucial to alleviating these concerns and thus improving the success of CDR [ 17 , 29 ].…”

“…HIV genetic sequences are also not always available for PLWH [ 16 ], which results in missing data for molecular clusters. Health departments must take into account implications related to the transparency of MHS data collection and meaningful community engagement among impacted populations [ 17 ]. An emphasis was placed on the need to train Disease Intervention Specialists (DIS) to engage people associated with molecular clusters and address MHS-related issues (e.g., HIV criminalization, medical mistrust) [ 17 ].…”

“…Health departments must take into account implications related to the transparency of MHS data collection and meaningful community engagement among impacted populations [ 17 ]. An emphasis was placed on the need to train Disease Intervention Specialists (DIS) to engage people associated with molecular clusters and address MHS-related issues (e.g., HIV criminalization, medical mistrust) [ 17 ]. To date, several key questions remain around the implementation of MHS to improve partner services [ 18 , 19 , 20 ] for identifying (1) people newly diagnosed with HIV; (2) PLWH with a detectable viral load; and (3) people vulnerable to HIV exposure.…”