ArticlePloS one2018
Willingness to participate in HIV research at the end of life (EOL).
Article in PloS one, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 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
- Determining Ethical Incentives in Biomedical HIV Research: Insights from Researchers, Regulators, and People Living with HIV.Journal of empirical research on human research ethics : JERHRE · 2026Article
- The brain as an HIV reservoir: Recent findings using autopsy tissues from people with HIV.PLoS pathogens · 2026Review
- Navigating the dual role of physician and clinician investigator in end-of-life research.AIDS care · 2025Article
- 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
- A Community-Driven Framework to Prioritize the Use of Donated Human Biological Materials in the Context of HIV Cure-Related Research at the End of Life.Pathogens & immunity · 2023Article
- Lessons for Understanding Central Nervous System HIV Reservoirs from the Last Gift Program.Current HIV/AIDS reports · 2022Review
- 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
- Recruitment and retention of underrepresented and vulnerable populations to research.Public health nursing (Boston, Mass.) · 2021Article
- Ethics of HIV cure research: an unfinished agenda.BMC medical ethics · 2021Review
- Article
- "My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life.AIDS research and human retroviruses · 2020Article
- Altruism: Scoping review of the literature and future directions for HIV cure-related research.Journal of virus eradication · 2020Article
- Performing rapid autopsy for the interrogation of HIV reservoirs.AIDS (London, England) · 2020Article
- Reduce and Control: A Combinatorial Strategy for Achieving Sustained HIV Remissions in the Absence of Antiretroviral Therapy.Viruses · 2020Review
- Article
- Highlights from the Fourth Biennial Strategies for an HIV Cure Meeting, 10-12 October 2018, Bethesda, MD, USA.Journal of virus eradication · 2019Article
- Ethical considerations for HIV cure-related research at the end of life.BMC medical ethics · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
introductionAnimal models have been vital for scientific discovery but have limitations, especially in infectious disease research. It is essential to develop a means to study these diseases in human models. We hypothesized that altruistic people would willingly participate in research near the end-of-life (EOL), for the benefit of science and to provide one last gift to society. METHODOLOGY: Two surveys were administered to 377 self-reported HIV-negative and 96 HIV-positive individuals. Hypothetical questions assessed their willingness to participate in altruistic research in the last 6 months of life, which might result in a shortened lifespan or physical discomforts. The self-reported HIV-negative group was also asked about willingness to be exposed to infectious pathogens for the sake of research.
resultsAlmost all responders expressed willingness to participate in research at the EOL, regardless of HIV-status. The majority of participants were willing to endure physical discomfort for the sake of research. 'Blood draws' was identified as the most tolerable physical discomfort (>70% in both groups). In both groups, >60% were willing to shorten their lifespans for the sake of research. A third of the self-reported HIV-negative group expressed willingness to be exposed to at least one infectious agent to participate in EOL research.
conclusionsOur exploratory study demonstrates that people would welcome the opportunity to participate in altruistic research near the EOL. Such research could greatly impact the way infectious disease research is conducted. This study is limited however by its hypothetical nature. Further research is necessary to confirm this interest in those with terminal illness before any further clinical research effort at the EOL can be performed.
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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.