Ethical HIV research with transgender and non‐binary communities in the United States

Abstract

Introduction Because transgender individuals experience disproportionately high rates of HIV infection, this population is an increasing focus of epidemiological and implementation science research to combat the epidemic. However, study participants, providers and other advocates have become increasingly concerned about research practices that may alienate, objectify, exploit or even re‐traumatize the communities they are designed to benefit. This commentary explores the common pitfalls of HIV research with transgender communities and provides a potential framework for ethical, community‐engaged research practice. Discussion We review some of the critical challenges to HIV research with transgender and non‐binary communities that limit the potential for such studies to improve practice. For example, scales that measure stigma perceptions/experiences often include activating language, while the consistent focus in research on risk and trauma can often feel judgemental and redundant. Because of limited employment opportunities, some participants may feel undue influence by research stipends; others may perceive their participation as fuelling the larger research economy without providing research jobs to community members. Questions remain regarding optimal strategies for authentic research partnership beyond community advisory boards or focus groups. Transgender and non‐binary researchers are under‐represented and may be tokenized. Many demonstration projects provide much‐needed services that disappear when the research funding is over, and community‐based dissemination efforts are often perceived as “too little, too late” to effect change. Conclusions Based on this review and input from study participants across the United States, we detail six recommendations for ethical HIV research with transgender and non‐binary communities, including (1) equitable budgeting with community‐based programme partners; (2) representation in the development of both research agenda and methods; (3) integration of research activities into the ongoing work of any clinical or service site, so that individuals’ needs as “clients” can continue to be prioritized over their role as “participants;” (4) mindfully considered compensation that values the contributions of community members, but avoids undue influence; (5) transparent, community‐focused and timely communication at every stage of the study, including research purpose, data usage, preliminary findings and full‐scale results; and (6) planning for sustainability of any programme or services beyond the life of the research project.

Ethical considerations for research with sexual and gender minorities

“…Beyond data collection: ethical issues in minority research Talbert (22) 2019 Preocupaciones éticas en torno a la investigación sobre minorías Ethical considerations in HIV E-health intervention research: implications for informational risk in recruitment, data maintenance, and consent procedures Fisher et al (23) 2020 Consideraciones éticas en la investigación de intervención en salud electrónica contra el VIH Studying trans: recommendations for ethical recruitment and collaboration with transgender participants in academic research William (24) 2018 Recomendaciones para el reclutamiento ético y la colaboración con participantes transgénero en la investigación académica Surveying trans and nonbinary communities: research methodologies, accountability, and ethics with the Trans Bodies, Trans Selves Survey (2nd edition)…”

Inclusion of Transgender and Gender Diverse People in Phase III Trials: Examples from HIV Pharmacologic Prevention Studies

“…Additionally, TGD community members have advocated for their inclusion within study teams. 30,34,[65][66][67] Using Global Community Advisory and Accountability Group feedback, PURPOSE-2 included study investigators and staff who were members of the study's priority population. 52 Diverse study teams can support participant retention efforts while minimizing REVIEW potential harm to the communities participating in the research.…”

“…While PURPOSE‐2 participant data are forthcoming, HPTN 083 exceeded its recruitment goal and illustrated the positive impact of enhanced recruitment efforts for transgender women. Additionally, TGD community members have advocated for their inclusion within study teams 30,34,65–67 . Using Global Community Advisory and Accountability Group feedback, PURPOSE‐2 included study investigators and staff who were members of the study's priority population 52 .…”

Improving the HIV response for transgender populations: evidence to inform action

“…Macdonald and colleagues lay out the history of WHO's evolving role in facilitating quality, gender‐affirming, culturally responsive care for transgender people across the globe [ 15 ]. Articles led by Allison [ 16 ] and Klein [ 17 ] provide important insights on best practices for conducting research with transgender people. Allison and colleagues outline the importance of trauma‐informed approaches, given the well‐documented structural and interpersonal violence experienced by transgender people [ 16 ].…”

“…Allison and colleagues outline the importance of trauma‐informed approaches, given the well‐documented structural and interpersonal violence experienced by transgender people [ 16 ]. Klein and Golub lay out ethical challenges observed in research with transgender people and provide practical recommendations for the conduct of research that addresses these challenges [ 17 ].…”