Abstract
IntroductionBiomedical research towards an HIV cure is advancing in the United States and elsewhere, yet little is known about perceptions of risks and benefits among potential study participants and other stakeholders. We conducted a qualitative study to explore perceived risks and benefits of investigational HIV cure research among people living with HIV (PLWHIV), biomedical HIV cure researchers, policy-makers and bioethicists.MethodsWe conducted a qualitative research study using in-depth interviews with a purposive sample of PLWHIV, biomedical HIV cure researchers, policy-makers and bioethicists in 2015–2016. We analysed interview transcripts using thematic analysis anchored in grounded theory.ResultsWe conducted and analyzed 36 key informant interviews. Qualitative analysis revealed four main findings. 1) Potential HIV cure study volunteers noted needing more information and education about the potential risks of HIV cure research. 2) Biomedical HIV cure researchers, policy-makers and bioethicists showed less awareness of social and financial risks of HIV cure research than PLWHIV. 3) Most respondents across the different categories of informants identified some risks that were too great to be acceptable in HIV cure research, although a subset of PLWHIV did not place an upper limit on acceptable risk. 4) PLWHIV showed a better awareness of potential psychological benefits of participating in HIV cure research than other groups of stakeholders.ConclusionOur research suggests that PLWHIV have a variable understanding of the individual risks, sometimes substantial, associated with participating in biomedical HIV cure research studies. Community engagement and increased research literacy may help improve community understanding. Intensive informed consent procedures will be necessary for ethical study implementation. The current state of HIV cure research offers greater potential benefits to society than to participants. There is likely to be disagreement among regulators, researchers, clinicians, and potential participants about what constitutes acceptable risk for HIV cure studies.
Highlights
Biomedical research towards an HIV cure is advancing in the United States and elsewhere, yet little is known about perceptions of risks and benefits among potential study participants and other stakeholders
Our research suggests that people living with HIV (PLWHIV) have a variable understanding of the individual risks, sometimes substantial, associated with participating in biomedical HIV cure research studies
In the context of highly effective modern combined antiretroviral therapy, biomedical HIV cure research that includes treatment interruption may confer risk of viral rebound that could be avoided by the current standard of care [2]
Summary
We conducted a qualitative research study using in-depth interviews with a purposive sample of PLWHIV, biomedical HIV cure researchers, policy-makers and bioethicists in 2015– 2016. 18 years, 7 males and 5 females) recruited from a subset of respondents in a social science quantitative survey on willingness to participate in HIV cure research conducted in the United States [3] None of these individuals were enrolled in biomedical HIV cure research at the time of the interview but were potential volunteers for or had previously volunteered in such research. The final group included 13 interviews with policy-makers or bioethicists, representing regulatory agencies and institutional review boards involved in HIV cure research and recruited from HIV cure stakeholder lists. HIV cure community advisory board members served as study co-investigators and were involved in the study design and review of data
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