Background: We assessed perceptions of benefits in HIV cure clinical research in the United States. We hypothesized that perceived personal benefits, clinical benefits and social benefits affect willingness to participate in research.
Methods: An extensive, online cross-sectional survey was conducted among 400 American adults (22% females; 77% males; < 1% transgendered) in 2015. The sample was ethnically diverse (65% Caucasian, 17% African-American/Black, 12% Hispanic, 4% mixed and 2% Asian) and 38 U.S. states were represented. We also conducted extensive key informant interviews with 36 people living with HIV, researchers, bioethicists, members of IRBs and regulatory agencies to assess perceptions of benefits.
Results: The psychological benefit of feeling good about contributing to HIV cure research (80%, 95% CI: [75-85%]; n = 396) and gaining knowledge about one''s health (78% [73 -83%]; n = 385) were the potential personal benefits most likely to motivate participation in HIV cure research. Increasing one''s ability to fight HIV (92% [87 - 97%]; n = 381) and reducing one''s HIV reservoir (85% [80 - 90%]; n = 380) were the potential clinical benefits most likely to motivate participation. Helping find a cure for HIV (95% [90 - 100%]; n = 382), helping others with HIV in the future (90% [85 - 95%]; n = 384) and contributing to scientific knowledge (88% [83 - 93%]; n = 380) were the most important perceived social benefits. We delved deeper into these perceived benefits in the key informant interviews. Potential volunteers reported feeling empowered, contributing to stigma reduction, , hope, education, bolstering one''s advocacy work, financial compensation and ensuring participation of under-represented populations. Regulators and clinicians-researchers concurred that early HIV cure studies are unlikely to provide any direct clinical benefit, but indicated that participants may experience other types of indirect benefit. Demographic differences in perceived benefits were also evaluated.
Conclusions: Despite no expectation of direct clinical benefit from participating in early Phase I HIV cure clinical studies, the majority of potential volunteers value the societal benefit of furthering science, and believe they will experience psychosocial benefits from their participation. Results highlight the importance of managing expectations and thoroughly exploring potential for therapeutic misconception.

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