August 8, 2018
Karine Dubé, DrPH, is a social scientist and an assistant professor in the Public Health Leadership Program at the UNC-Chapel Hill Gillings School of Global Public Health. Her research recently has focused on the ethics of incentives in HIV research.
To encourage volunteers to participate in clinical and socio-behavioral studies, HIV researchers may offer payments such as reimbursements for out-of-pocket expenses, compensation for time and burdens, or incentives for participation, such as cash or gift cards. There is a great deal of variability on how ethical payments for HIV research are defined, and no clear ethical guidelines currently exist. In many cases, payments are not discussed during a study’s protocol review.
It is critically important, however, to ensure that people are not unduly influenced or coerced into study participation, and that any payments made are adequate to retain participants in studies that require long-term follow-up.
As a step toward addressing this concern, Dubé and co-authors published a paper in the July-August issue of IRB: Ethics & Human Research in which they advocate for additional guidance on payments in clinical research and promote the idea of a database of payment practices specific to HIV research.
This database would be employed, they explained, to track payment data and open new avenues for exploring topics such as incentive disparities, undue inducement and failure or success rates of studies that require participants to remain incentivized over time.
“We need more empirical data about the effect of payments, compensation and incentives on decision-making, as well as additional guidance on the range, type and amounts of incentives that investigators should provide to participants in HIV and non-HIV clinical studies,” said Dubé. “We also need ways to help identify payments that could unduly induce participation in research or, conversely, payments that may be too low.”
According to Dubé and co-authors, payment decisions should be made by determining how key stakeholders view and assess financial incentives and reaching consensus among these stakeholders on factors to consider when deciding on payment practices. There should also be a clearer framework, they propose, to help foster ethical decision-making about incentives for participation in all research.
Dubé was joined in the study by researchers at the University of California Riverside, UC San Diego, Harvard Medical School, the Harvard T.H. Chan School of Public Health and the Yale School of Public Health.
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