To encourage subjects to participate in clinical and behavioral HIV studies, researchers often offer incentives such as cash or gift cards. But such remuneration could distort the sampling and end up inadvertently hurting the research findings. Lured by the incentives, participants could easily conceal information about themselves to qualify. Or they could give false information about themselves in order to stay in the study.
Brandon Brown is the lead author of a paper in the July-August issue of IRB: Ethics & Human Research in which he and some colleagues advocate for a database of payment practices in HIV research to be employed to track payment data and open “new avenues for exploring topics such as incentive disparities, undue inducement, and a failure or success rates of studies that require participants to remain incentivized over time.”
“Such a database would provide baseline data that could be used for developing guidance on the range, types, and amounts of incentives investigators should provide to participants in HIV and non-HIV studies,” said Brown, an assistant professor in the department of social medicine and population health in the School of Medicine. “The database could also help identify payments that could unduly induce participation in HIV research, or payments that are too low and disrespectful to people’s time.”
According to Brown and his coauthors, payment decisions should be made by determining how key stakeholders view and assess financial incentives; reaching consensus among these stakeholders on factors to consider when deciding on payment practices; reviewing the literature on incentives provided in previous biomedical HIV studies; and developing a framework to foster ethical decision-making about incentives.
“Otherwise, researchers may continue to follow perceived trends or historical precedents to determine what they perceive to be ethically appropriate incentives without critical assessment,” Brown said.
He was joined in the study by researchers at Harvard Medical School; the University of North Carolina, Chapel Hill; UC San Diego; Yale School of Public Health; Harvard TH Chan School of Public Health; and the Collaboratory of AIDS Researchers for Eradication in Palm Springs.