ArticlePloS one2017
'Well, It's the Risk of the Unknown… Right?': A Qualitative Study of Perceived Risks and Benefits of HIV Cure Research in the United States.
Article in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 53 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
53 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review.Journal of empirical research on human research ethics : JERHRE · 2023Pooled it
- The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives.AIDS and behavior · 2023Pooled it
- Participant Perspectives and Experiences Following an Intensively Monitored Antiretroviral Pause in the United States: Results from the AIDS Clinical Trials Group A5345 Biomarker Study.AIDS research and human retroviruses · 2022Trial
- Participant Perspectives and Experiences Entering an Intensively Monitored Antiretroviral Pause: Results from the AIDS Clinical Trials Group A5345 Biomarker Study.AIDS research and human retroviruses · 2021Trial
- Participant Perspectives in an HIV Cure-Related Trial Conducted Exclusively in Women in the United States: Results from AIDS Clinical Trials Group 5366.AIDS research and human retroviruses · 2020Trial
- Ethics of treatment interruption trials in HIV cure research: addressing the conundrum of risk/benefit assessment.Journal of medical ethics · 2018Trial
- Framing a Consent Form to Improve Consent Understanding and Determine How This Affects Willingness to Participate in HIV Cure Research: An Experimental Survey Study.Journal of empirical research on human research ethics : JERHRETrial
- HIV Cure Research: Ethical and Real-World Practical Considerations for Pediatric and Adolescent Populations.Journal of the Pediatric Infectious Diseases Society · 2026Article
- "Sometimes They Exclude Us because of Our Age-That's Not Right": Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States.AIDS research and human retroviruses · 2025Article
- The expected impact of a cure for HIV among people with HIV and key populations.Communications medicine · 2025Article
- Exploring Stigma and Self-Image: Mixed-Methods Insights from HIV Cure-Related Research Participants Undergoing Analytical Treatment Interruptions.AIDS patient care and STDs · 2025Observational
- Evaluating the psychosocial experiences of participants in HIV cure research before, during, and after analytical treatment interruptions: A longitudinal qualitative study in the United States.Social science & medicine (1982) · 2025Article
- Antiretroviral pause for HIV remission trials: A mixed methods study of people living with HIV in Soweto, South Africa.PLOS global public health · 2025Article
- Recall and Appraisal of the Risks, Benefits, and Objectives of Interrupting HIV Treatment in an HIV Cure-Related Study.AIDS and behavior · 2024Article
- Participant experiences in a combination HIV cure-related trial with extended analytical treatment interruption in San Francisco, United States.HIV research & clinical practice · 2024Article
- Advances and challenges in gene therapy strategies for pediatric cancer: a comprehensive update.Frontiers in molecular biosciences · 2024Review
- Participant experiences in HIV cure-directed trial with an extended analytical treatment interruption in Philadelphia, United States.HIV research & clinical practice · 2023Article
- Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States.Journal of virus eradication · 2023Article
- Healthcare Provider Perspectives on HIV Cure Research in Ghana.AIDS research and treatment · 2023Article
- Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.AIDS research and human retroviruses · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.