Indirect Benefits in HIV Cure Clinical Research: A Qualitative Analysis

AIDS Research and Human Retroviruses
Adam GilbertsonJoseph D Tucker

Abstract

Currently, much of early phase HIV cure research involves unknown and potentially serious risks, with little or no chance of direct health benefits. During informed consent, researchers emphasize this lack of personal medical benefit to minimize misconceptions that undermine genuine consent. We explored participants' and researchers' perspectives on HIV cure clinical research participation and its potential benefits. We conducted semistructured interviews with 17 HIV cure research participants and nine researchers in North Carolina, USA. We analyzed interviews to identify participant experience-related themes. We were particularly interested in indirect benefits, such as psychological support or improved care. We also assessed five consent documents for benefit/risk-related language. Research participants were male, with a median age of 50 (range: 28-62); most were non-Hispanic white (15/17) and men who have sex with men (13/17). All 17 trial participants found research participation meaningful and beneficial. Reported benefits included improved healthcare (16/17), HIV knowledge (13/17), intimate relationships (10/17), and positive behaviors (6/17). In addition, all participants described psychological benefits, including incre...Continue Reading

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Oct 31, 2019·Journal of the International AIDS Society·Karine DubéPaul Gaist
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Jul 2, 2021·BMC Medical Ethics·Karine DubéJeremy Sugarman

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Methods Mentioned

BETA
leukapheresis

Software Mentioned

MAXQDA

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