“ethical pickles”: How Canadian HIV CBPR researchers navigate tricky terrain

BACKGROUND: The HIV sector was one of the earliest health movements to adopt community based participatory research approaches (CBPR). HIV/AIDS CBPR studies are presenting distinctive ethical issues for both researchers and research ethics boards (REBs). Surprisingly little information documenting the perspectives of HIV CBPR practitioners on ethics exists. METHODS: We interviewed 55 funded HIV/AIDS CBR practitioners from across Canada (academics, researchers housed in community settings, service providers, etc.) about 1) their training, 2) their involvement in CBPR, 3) experiences with ethical review, and 4) what kinds of issues emerged over the life of their projects. Interviews were transcribed and thematically coded in qualitative analysis software. Coded data were then summarized into thematic categories and discussed collectively with our research team. RESULTS: Participants identified a broad range of ethical dilemmas facing them in their daily work, including: managing disclosure/discovery of illegal activity in projects, maintaining confidentiality in “small” communities, minimizing possible coercion when recruiting through services, challenges associated with triggering reactions to past trauma, and difficulties determining appropriate compensation. CONCLUSION: Our data illuminate the complexities involved in collaborative research with marginalized communities. It suggests that many are not being adequately prepared by their training, or REBs, for the kinds of ethical challenges they encounter. Many identified the need to find forums to discuss these issues and learn from each other. As the HIV/AIDS research sector becomes more mature, challenging ethical tensions are emerging that command discussion, debate and thought beyond what traditional research ethics frameworks offer.