“We’re giving you something so we get something in return”: Perspectives on research participation and compensation among people living with HIV who use drugs

Abstract

BackgroundCompensation for participating in research has been a fundamental element of the research apparatus despite concerns about its impact on incentivising participation. Researchers and research ethics boards acknowledge that compensation may prompt structurally vulnerable populations, such as people who use drugs (PWUD), to engage in research primarily out of financial need. Thus, institutional restrictions around compensation have been implemented. This study explores the ethical implications of compensation practices aimed at ‘protecting’ structurally vulnerable people living with HIV (PLHIV) who use drugs within the context of individuals’ lived realities. MethodsWe draw on five focus groups conducted in 2011 with 25 PLHIV who use drugs and access a community-based HIV care facility in Vancouver, Canada. This analysis focused on participants’ perceptions of research compensation, which became the central point of discussion in each group. ResultsParticipants viewed research as a transactional process through which they could challenge the underpinnings of bioethics and bargain for compensation. Research compensation was thus critical to attracting participants and positioned as a ‘legitimate’ form of income. Participants’ medicalised identities, specifically living with HIV, were fundamental to justifying compensation. The type of compensation (e.g. gift card, cash) also significantly impacted whether participants were fully compensated and, at times, served to exacerbate their structural vulnerability. ConclusionResearch compensation is critical in shaping structurally vulnerable populations’ participation and experiences with research and can further marginalize individuals. Practices surrounding research compensation, particularly for drug-using and HIV-positive populations, need to be evaluated to ensure participants are equitably compensated for the expertise they provide.