In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research.
The Meaningful Involvement of People with HIV/AIDS (MIPA) has been at the core of the HIV response since the beginning of the HIV epidemic. In this study, we compare two community engagement activities concerned with molecular HIV surveillance (MHS) in the United States: one governmental and one community-led. We examine the consultative aspects of each one, especially as they relate to people living with HIV. We point to the community-based effort—which used a participatory praxis approach—as an example of MIPA. We derive two best practice principles from this research from the field.
I n this commentary, we discuss the health equity implications of collecting and reporting data stratified by binary male/female categories in sexual health and sexually transmitted infection (STI)/ human immunodeficiency virus (HIV) research and surveillance without meaningful inclusion of transgender, nonbinary, and gender diverse identities. Numerous institutional bodies have recommended collecting and reporting data disaggregated by trans-inclusive categories, including the National Institutes of Health and the National Academy of Sciences. 1,2 However, a review of articles published by Sexually Transmitted Diseases in 2020, for example, yielded 121 articles (of 166 that included human participants) that only reported data by male/female categories and conflated sex assigned at birth with gender (eg, by referring to people assigned female at birth as women, and people assigned male at birth as men). In addition, core surveillance systems and large national data sources, such as the Centers for Disease Control and Prevention 2018 STD Surveillance Report and Health People 2030, also continue to report data in this way.Trans adults comprise 0.6% of the population, or at least 1.4 million adults living in the United States, and a recent study estimated that approximately 1.2 million adults in the US identify as nonbinary. [3][4][5] In addition, an estimated 1.3% to 2.7% of adolescents in the United States identify as trans or nonbinary. [6][7][8] Trans and nonbinary people are disproportionally burdened by poor health From the
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.
Purpose of Review
Pre-exposure prophylaxis (PrEP) represents one of the most effective methods of prevention for HIV, but remains inequitable, leaving many transgender and nonbinary (trans) individuals unable to benefit from this resource. Deploying community-engaged PrEP implementation strategies for trans populations will be crucial for ending the HIV epidemic.
Recent Findings
While most PrEP studies have progressed in addressing pertinent research questions about gender-affirming care and PrEP at the biomedical and clinical levels, research on how to best implement gender-affirming PrEP systems at the social, community, and structural levels remains outstanding.
Summary
The science of community-engaged implementation to build gender-affirming PrEP systems must be more fully developed. Most published PrEP studies with trans people report on outcomes rather than processes, leaving out important lessons learned about how to design, integrate, and implement PrEP in tandem with gender-affirming care. The expertise of trans scientists, stakeholders, and trans-led community organizations is essential to building gender-affirming PrEP systems.
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