Evidence map›Paper›PMID 35732421›Full record

ArticleJournal of medical ethics2023

Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life.

John Kanazawa, Stephen A Rawlings, Steven Hendrickx, Sara Gianella, Susanna Concha-Garcia, Jeff Taylor, Andy Kaytes, Hursch Patel, Samuel Ndukwe, Susan J Little and 2 more

Open access · hybridAbstract read
In one paragraph

Article in Journal of medical ethics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
2.0field-weighted citation impact, top 14% of its field
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

11 citing papers in PubMed, 22 citations in OpenAlex.

  1. Article
  2. Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action.International journal of environmental research and public health · 2026
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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

12 authors at 3 institutions in 1 country.

John KanazawaGillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.ORCID 0000-0001-7064-6657
Stephen A RawlingsDepartment of Medicine, University of California San Diego, La Jolla, California, USA.
Steven HendrickxAntiViral Research Center, University of California San Diego, San Diego, California, USA.
Sara GianellaDepartment of Medicine, University of California San Diego, La Jolla, California, USA.
Susanna Concha-GarciaAntiViral Research Center, University of California San Diego, San Diego, California, USA.
Jeff TaylorHIV + Aging Research Program - Palm Springs (HARP-PS), Palm Springs, California, USA.
Andy KaytesAntiViral Research Center Community Advisory Board, University of California San Diego, La Jolla, California, USA.
Hursch PatelGillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Samuel NdukweGillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Susan J LittleDepartment of Medicine, University of California San Diego, La Jolla, California, USA.
Davey SmithDepartment of Medicine, University of California San Diego, La Jolla, California, USA.
Karine DubéGillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA karine_dube@med.unc.edu.ORCID 0000-0003-3458-1539
University of California San Diego · USUniversity of North Carolina at Chapel Hill · USAdvisory Board Company (United States) · US

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
VirologyP30AI036214 · NIAID · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI SUSAN JANET LITTLE · 1994 to 2026
$78.4M
HOPE - HIV Obstruction by Programmed EpigeneticsUM1AI164559 · NIAID · J. DAVID GLADSTONE INSTITUTES · PI Lishomwa C Ndhlovu, Melanie Maria Ott · 2021 to 2026
$32.2M
First-in-human study of two anti-SARS CoV-2 antibodies in health volunteersUM1AI126620 · NIAID · WISTAR INSTITUTE · PI MONTANER, LUIS J, RILEY, JAMES L. · 2016 to 2021
$24.5M
Project-004P01AI169609 · NIAID · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI David Mitchell Smith · 2022 to 2026
$10.6M
HOPE Training GrantT32AI007384 · NIAID · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI Sara Gianella Weibel, Scott L Letendre · 1990 to 2026
$9.7M
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
Mechanisms of CMV Replication on HIV PersistenceR01AI147821 · NIAID · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI GIANELLA WEIBEL, SARA · 2020 to 2024
$3.2M
The HIV-associated Opioid Micro-Environment (HOME) ProjectDP2DA051915 · NIDA · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI GIANELLA WEIBEL, SARA · 2020 to 2020
$2.4M
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 P30 AI036214NIAID NIH HHS R01 AI147821NIAID NIH HHS T32 AI007384NIAID NIH HHS UM1 AI126620NIAID NIH HHS UM1 AI164559NIDA NIH HHS DP2 DA051915NIMH NIH HHS R21 MH118120NIMH NIH HHS R25 MH067127
6 · The paper itself

Abstract

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations.

Indexed as

DeathHIV InfectionsCommunicationHumansInformed ConsentTerminally IllClinical EthicsEnd-of-lifeEthicsHIVResearch Ethics

Identifiers

PMID35732421
PMCPMC9772357
OpenAlexW4283259607

What OpenQuestion holds

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LicenceCC BY-NC
Read underepoch 390

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.