Determining Ethical Incentives in Biomedical HIV Research: Insights from Researchers, Regulators, and People Living with HIV.

Abstract

Incentives are crucial for recruiting and retaining participants in research studies, yet researchers and regulators often struggle to determine appropriate incentives due to ethical concerns and a lack of clear guidelines. We conducted interviews and focus groups with three stakeholder groups-biomedical HIV researchers (n = 12), institutional review board (IRB) members (n = 12), and people living with HIV (PLWH) (n = 69)-to explore their perspectives on incentives and ethical decision-making in biomedical HIV research. Our findings revealed disparities in perspectives; researchers and IRB members were most concerned about offering high incentives, while PLWH were most concerned about incentives being too low. Consensus highlighted the need for diverse incentive options, transparency, standardized guidelines, and community engagement to address both ethical and practical challenges.