OA1-1 Unanticipated participant benefits in HIV cure clinical research: a qualitative analysis
Year: 2016
Type: article
Abstract: Background: Early-phase HIV cure research involves substantial and often unknown risks, with no direct participant health benefits.During informed consent and subsequent study visits, researchers emphasize this lack of benefit with the intent of minimizing misconceptions that undermine genuine consent.We explored what, if any, social, psychological, and/or emotional benefits exist for HIV cure study participants.Accordingly, we considered the significance of these often unrecognized benefits and how they may impact responsible conduct of research.Methods: We conducted in-depth, semi-structured interviews with 33 adults, including 15 HIV cure research participants, ten research staff (e.g.participant screeners, research coordinators), and eight bench scientists or physician-researchers in Chapel Hill and Durham, North Carolina, USA.Interviews were audio-recorded, transcribed, and then coded and analysed using MAXQDA® to identify themes related to participants' experiences and perceptions of research benefits.Results: The 15 HIV cure participant-interviewees were all men with a median age of 48 (range: 28-62 years).Most were white (13/15); one was Black, and one Latino.Ten of 15 participants self-identified as gay.All 15 participant-interviewees reported benefits related to cure research, including improved HIV knowledge/awareness (14/15); improved healthcare (12/15); improved personal relationships (8/15); and positive behavioural changes (6/15).Fourteen participantinterviewees described psychological/emotional benefits, including a sense of helping others.Other benefits included: sense of purpose, increased self-worth, and emotional support through interactions with research team members.Five participant-interviewees expressed intent to continue in cure research for as long as possible; two indicated that only death would stop them from participating in cure research.Among researchers and staff, social, psychological, and/or emotional participant benefits were only mentioned in roughly half of the interviews -suggesting less emphasis on these benefits.Conclusions: We observed substantial unanticipated social, psychological, and emotional benefits associated with HIV cure research.These are important and are often the primary reasons participants continue to take part in studies.Participants felt they were taking part in something important and larger than themselves.These benefits, while subjective and contingent, should be considered when recruiting participants and are important for informed consent processes.
Source: Journal of Virus Eradication
Authors: A. Gilbertson, S. Rennie, E. Kelly, J. Kuruc, J. Tucker
Institution: University of North Carolina at Chapel Hill
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,950
OpenAlex ID: W3044823776