Trial reportJournal of medical ethics2018
Ethics of treatment interruption trials in HIV cure research: addressing the conundrum of risk/benefit assessment.
Trial report in Journal of medical ethics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 54 papers, 1 of them a synthesis 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
54 citing papers in PubMed, 1 synthesis or guideline pooled 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
- Motivations and Decision Making Processes of Men With X-linked Retinoschisis Considering Participation in an Ocular Gene Therapy Trial.American journal of ophthalmology · 2019Trial
- 'It is scary to pause treatment': perspectives on HIV cure-related research and analytical treatment interruptions from women diagnosed during acute HIV in Durban, South Africa.HIV research & clinical practice · 2025Article
- Integrating socio-behavioral, ethics, community, and translational science considerations in HIV cure research.Current opinion in HIV and AIDS · 2025Review
- Participant Perspectives in an HIV Treatment Interruption Study in San Francisco, United States.AIDS research and human retroviruses · 2025Article
- Development and Evaluation of Decision Partner: A Decision Aid for HIV Remission Clinical Trial Participation.AIDS and behavior · 2025Article
- The expected impact of a cure for HIV among people with HIV and key populations.Communications medicine · 2025Article
- Lessons Learned in Eliciting Systematic Participant Perspectives in a Combination HIV Cure Research Trial.AIDS research and human retroviruses · 2025Article
- 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
- Recall and Appraisal of the Risks, Benefits, and Objectives of Interrupting HIV Treatment in an HIV Cure-Related Study.AIDS and behavior · 2024Article
- Analytical treatment interruption in children living with HIV: position statement from the EPIICAL consortium.The lancet. HIV · 2024Review
- Participant experiences in a combination HIV cure-related trial with extended analytical treatment interruption in San Francisco, United States.HIV research & clinical practice · 2024Article
- HIVepsilon-seq-scalable characterization of intact persistent proviral HIV reservoirs in women.Journal of virology · 2023Article
- Participant experiences in HIV cure-directed trial with an extended analytical treatment interruption in Philadelphia, United States.HIV research & clinical practice · 2023Article
- HIV remission trial investigators' attitudes towards risk and risk mitigation in trials that include treatment interruption.Journal of virus eradication · 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
- Decision making for invasive and non-invasive optional procedures within an acute HIV research cohort in Bangkok.Contemporary clinical trials communications · 2023Article
Corrections and comments
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Authors and funding
13 authors.
Funding
Abstract
Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption (ATI), involve uncertain and potentially high risk, with minimal chance of clinical benefit. Some question whether such trials should be offered, given the risk/benefit imbalance, and whether those who choose to participate are acting rationally. We address these questions through a longitudinal decision-making study nested in a Thai acute HIV research cohort.In-depth interviews revealed central themes about decisions to join. Participants felt they possessed an important identity as members of the acute cohort, viewing their bodies as uniquely suited to both testing and potentially benefiting from HIV cure approaches. While acknowledging risks of ATI, most perceived they were given an opportunity to interrupt treatment, to test their own bodies and increase normalcy in a safe, highly monitored circumstance. They were motivated by potential benefits to themselves, the investigators and larger acute cohort, and others with HIV. They believed their own trial experiences and being able to give back to the community were sufficient to offset participation risks.These decisions were driven by the specific circumstances experienced by our participants. Judging risk/benefit ratios without appreciating these lived experiences can lead to false determinations of irrational decision- making. While this does not minimise vital oversight considerations about risk reduction and protection from harm, it argues for inclusion of a more participant-centered approach.
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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.