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

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.

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.

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.