Brandon Brown, a professor of social medicine, population, and public health at the University of California, Riverside School of Medicine, is a coauthor on a paper published in the Journal of Empirical Research on Human Research Ethics that examines how different stakeholders view financial incentives in HIV research, highlighting ethical tensions around how much participants should be paid. 

By speaking with researchers, ethics board members, and people living with HIV, the study, titled “Determining Ethical Incentives in Biomedical HIV Research: Insights from Researchers, Regulators, and People Living with HIV,” sheds light on ongoing debates about what counts as fair and ethical compensation and calls for clearer guidelines, transparency, and community input to create fair and ethical incentive practices.

Brown’s work focuses on HIV prevention, health equity, and bioethics, with an emphasis on addressing stigma and improving care for underserved communities. He has contributed extensively to global public health initiatives and was recognized as a fellow of The Hastings Center for his impact in the field of ethical healthcare research. Below, he answers a few questions about the study.

Q: What prompted this study on research incentives?

Payment in research is a common practice. But there is little guidance on what is appropriate to provide people who participate in research, with perceived ethical concerns when incentive amounts are either too high or too low. Experienced researchers may believe what they provide is appropriate, and emerging researchers may not have an idea what is appropriate. Participants themselves may feel that underpayment is disrespectful to their contributions to the research process. We wanted to get the perspective of the various research stakeholders on incentives.

Q: Who participated in the study?

We talked to three groups: HIV researchers, ethics board members (IRBs), and people living with HIV. This helped us see the issue from different points of view.

Q: What were the main differences in perspective among these groups?

Researchers and IRB members were mostly worried about payments being too high. People living with HIV were more concerned about payments being too low and not reflecting their time and effort.

Q: Were there any areas of agreement?

Yes. Everyone agreed that we need clearer rules, more openness about how payments are decided, more options for how people are paid, and better involvement of participants in these decisions.

Q: What best practices emerged from your findings?

Engaging the participant community early in the research process, which may include representation in the research team at the step of what research topic is important to pursue for protocol development, is crucial to determining appropriate incentive types and amounts.

Q: What gaps remain in current research on this topic?

Payment data can be difficult to identify both within and across different studies. There is no participants payment database, and no clear guidance on specific amounts that are appropriate to pay people who participate in research. Institutions, ethics committees, journals, funders, and researchers all need to do a better job at making payment amounts more transparent, which may help guide future payment decision-making.

Q: What are the implications for education and policy?

Our results highlight the disparity between participant concerns (incentive amounts are too low) and researcher/IRB concerns (incentive amounts are too high). Researchers need to do a better job in listening to and engaging with the participant community in the process of planning research projects, including determining incentive types and amounts.

Q: What is the broader significance of this study?

Decisions on incentive amounts and types in research are being made in a vacuum. In the best-case scenario, researchers are working with community members to determine appropriate incentive amounts for study participation prior to creating a study budget. More typically, researchers determine incentive amounts themselves based on previous experience, budgetary constraints, or guesswork. To help us make decisions on incentives in research, we need more incentive data, standardized guidelines, and true community engagement.

Q: Why should all researchers who work with participants care about these results?

Each of us may believe we are providing fair and appropriate payment to participants in our studies. But without data, without specific guidance, and without the participant perspective, it’s just a belief and nothing more. As researchers, we need to do better.