Financial compensation not the only reason people participate in HIV studies

Brandon Brown

Injection drug use is one of the main causes of HIV transmission in the U.S. and its territories, due largely to contaminated blood being shared through syringes and injection equipment.

Focusing on Puerto Rico, three researchers, including Brandon Brown in the School of Medicine, conducted a study in which 40 participants were interviewed to explore both their motivations to enroll in the study, such as financial compensation, and their views on how this compensation relates to research trust. The participants had been previously enrolled in a much larger study.

The study, published in the journal Ethics and Behavior, found that financial compensation was the main motivation for initially enrolling in the study for a large majority of participants, but access to HIV and hepatitis C virus, or HCV, test results was also an important consideration.

Brown, an associate professor in the UCR Center for Healthy Communities, and his colleagues collected demographic data such as age, education, income, costs of acquiring drugs, frequency of drug use, and access to health care, and documented how people who inject drugs in rural Puerto Rico perceive payments for participating in HIV epidemiological studies.

“While initially financial compensation was mentioned as the main motivation for enrolling in the study, as trust in the researchers developed, participants came to see compensation as part of a reciprocal exchange. They assisted the researchers by providing data and researchers reciprocated with cash,” Brown said.

He added that participants who inject more frequently, and thus require more financial resources to afford their habit, are particularly motivated by the prospect of receiving cash.

“But we found participants also value the possibility of receiving HIV/HCV tests in a trusting and confidential environment,” Brown said. “They see trust as a process in which reciprocity pays a critical role. But if this trust is absent, the offer of financial compensation can lead participants to reassert themselves by deceiving researchers they feel are not fulfilling their obligations. As researchers we must do better to truly earn the trust of our participants, who are our equal partners in the research project”

The study’s lead author is at the University of Nebraska-Lincoln.

Iqbal Pittalwala

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