ArticleAIDS research and human retroviruses2015
The ethics of HIV "cure" research: what can we learn from consent forms?
Article in AIDS research and human retroviruses, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers.
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Who cites it
41 citing papers in PubMed.
- 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
- "Cure" Versus "Clinical Remission": The Impact of a Medication Description on the Willingness of People Living with HIV to Take a Medication.AIDS and behavior · 2020Trial
- 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
- Immunogenicity of AGS-004 Dendritic Cell Therapy in Patients Treated During Acute HIV Infection.AIDS research and human retroviruses · 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
- Envisioning a Multidisciplinary HBV Cure Research Agenda.Current HIV/AIDS reports · 2025Review
- Integrating socio-behavioral, ethics, community, and translational science considerations in HIV cure research.Current opinion in HIV and AIDS · 2025Review
- 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
- Participant experiences in a combination HIV cure-related trial with extended analytical treatment interruption in San Francisco, United States.HIV research & clinical practice · 2024Article
- Participant experiences in HIV cure-directed trial with an extended analytical treatment interruption in Philadelphia, United States.HIV research & clinical practice · 2023Article
- Ethical and practical considerations for cell and gene therapy toward an HIV cure: findings from a qualitative in-depth interview study in the United States.BMC medical ethics · 2022Article
- Ethical considerations for HIV remission clinical research involving participants diagnosed during acute HIV infection.BMC medical ethics · 2021Article
- Evaluating the Impact of Incentives on Clinical Trial Participation: Protocol for a Mixed Methods, Community-Engaged Study.JMIR research protocols · 2021Article
- Ethics of HIV cure research: an unfinished agenda.BMC medical ethics · 2021Review
- Re-examining the HIV 'functional cure' oxymoron: Time for precise terminology?Journal of virus eradication · 2020Article
- HIV Cure Research: Risks Patients Expressed Willingness to Accept.Ethics & human research · 2019Article
- Applying the Behavioural and Social Sciences Research (BSSR) Functional Framework to HIV Cure Research.Journal of the International AIDS Society · 2019Review
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Abstract
The advent of HIV "cure" research has generated enormous attention, but also concern about its potential to engender false hope, leading to overestimation of benefits and underestimation of risks, and about recruiting relatively healthy participants to studies with uncertain or serious risks. Currently, little is known about potential ethical problems in the ways that informed consent for HIV cure research is described to potential participants. As a first step to address this question, early phase, HIV "cure" research consent forms were analyzed to assess how study aims and potential risks and benefits are presented. Thirteen consent forms from a diverse group of clinical studies were selected to represent the major categories of cure research, including 11 interventional (gene transfer, vaccine intensification, treatment interruption, and latency reversing) and two observational. Consent forms were coded using seven categories, abstracting data on study purpose and design, participant selection criteria, presentation of risks and benefits of participation, and potential return of research results. Findings demonstrate variation and deficiencies that merit attention, but that can largely be addressed by turning to existing guidance about early phase research and specific study designs from other research contexts. The most challenging of these is ensuring that clear, specific, and consistent language is used to describe study aims, risks, benefits, and possible return of results. Informed consent for HIV "cure" research represents an opportunity to apply relevant existing guidance, measure the effectiveness of its application, and develop standardized best-practice policies for consent forms and processes.
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