Evidence map›Paper›PMID 35012544›Full record

ArticleBMC medical ethics2022

Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States.

John Kanazawa, Sara Gianella, Susanna Concha-Garcia, Jeff Taylor, Andy Kaytes, Christopher Christensen, Hursch Patel, Samuel Ndukwe, Stephen A Rawlings, Steven Hendrickx and 4 more

Abstract read
In one paragraph

Article in BMC medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

12 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action.International journal of environmental research and public health · 2026
    Article
  5. Review
  6. Searching for a HIV-1 Cure.Theranostics · 2026
    Review
  7. Article
  8. Article
  9. Article
  10. Article
  11. Review
  12. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

John KanazawaGillings School of Global Public Health, University of North Carolina at Chapel Hill, 4108 McGavran-Greenberg Hall, Chapel Hill, NC, USA.
Sara GianellaDepartment of Medicine, Division of Infectious Diseases and Global Public Health, University of California San Diego, La Jolla, CA, USA.
Susanna Concha-GarciaAntiViral Research Center (AVRC), University of California at San Diego, 220 Dickinson Street, Suite A, San Diego, CA, USA.
Jeff TaylorAVRC Community Advisory Board, University of California San Diego, 220 Dickinson Street, Suite A, San Diego, CA, USA.
Andy KaytesAVRC Community Advisory Board, University of California San Diego, 220 Dickinson Street, Suite A, San Diego, CA, USA.
Christopher ChristensenHIV + Aging Research Project - Palm Springs (HARP-PS), 1775 Palm Canyon Drive, Suite 110-349, Palm Springs, CA, USA.
Hursch PatelGillings School of Global Public Health, University of North Carolina at Chapel Hill, 4108 McGavran-Greenberg Hall, Chapel Hill, NC, USA.
Samuel NdukweGillings School of Global Public Health, University of North Carolina at Chapel Hill, 4108 McGavran-Greenberg Hall, Chapel Hill, NC, USA.
Stephen A RawlingsDepartment of Medicine, Division of Infectious Diseases and Global Public Health, University of California San Diego, La Jolla, CA, USA.
Steven HendrickxAntiViral Research Center (AVRC), University of California at San Diego, 220 Dickinson Street, Suite A, San Diego, CA, USA.
Susan LittleDepartment of Medicine, Division of Infectious Diseases and Global Public Health, University of California San Diego, La Jolla, CA, USA.
Brandon BrownDepartment of Social Medicine, Population and Public Health, Center for Healthy Communities, University of California, Riverside, 3333 14th Street, Riverside, CA, USA.
Davey SmithDepartment of Medicine, Division of Infectious Diseases and Global Public Health, University of California San Diego, La Jolla, CA, USA.
Karine DubéGillings School of Global Public Health, University of North Carolina at Chapel Hill, 4108 McGavran-Greenberg Hall, Chapel Hill, NC, USA. karine_dube@med.unc.edu.

Funding

UC San Diego Clinical and Translational Research InstituteUL1TR001442 · NCATS · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI FIRESTEIN, GARY S, HOGARTH, MICHAEL · 2015 to 2024
$88.3M
STRUCTURAL NEUROIMAGING COREP30MH062512 · NIMH · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI Jessica Lynette Montoya · 2001 to 2026
$50.4M
BEAT-HIV: Delaney Collaboratory to Cure HIV-1 Infection by Combination ImmunotherapyUM1AI164570 · NIAID · WISTAR INSTITUTE · PI Luis J Montaner, James L. Riley · 2021 to 2026
$34.7M
California NeuroAIDS Tissue NetworkU24MH100928 · NIMH · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI ACHIM, CRISTIAN L, MOORE, DAVID J · 2013 to 2023
$13.9M
Project-004P01AI169609 · NIAID · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI David Mitchell Smith · 2022 to 2026
$10.6M
Training Program for Scientists Conducting Research to Reduce HIV Health DisparitR25MH067127 · NIMH · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI Emily A Arnold, Torsten Brian Neilands · 2003 to 2026
$5.4M
Pilot Integration of Participant-Centered Outcomes in HIV Cure Research in the United States: Implications for Ethical ConductR21MH118120 · NIMH · UNIV OF NORTH CAROLINA CHAPEL HILL · PI DUBE, KARINE · 2019 to 2020
$566k
NCATS NIH HHS UL1 TR001442NIAID NIH HHS P01 AI169609NIAID NIH HHS UM1 AI164570NIMH NIH HHS P30 MH062512NIMH NIH HHS R21 MH118120NIMH NIH HHS R21MH118120NIMH NIH HHS R25 MH067127NIMH NIH HHS U24 MH100928
6 · The paper itself

Abstract

backgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.

methodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.

resultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants' comfort and needs at the EOL.

conclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research's impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings.

Indexed as

HIV InfectionsDeathFocus GroupsHumansQualitative ResearchResearch PersonnelUnited StatesAltruismEmpirical ethicsEnd-of-lifeHIV cure researchLast GiftPeople with HIVRapid research autopsy

Identifiers

PMID35012544
PMCPMC8748179

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

None linked

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.