Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life.
Clinical Ethics
End-of-life
Ethics
HIV
Research Ethics
Journal
Journal of medical ethics
ISSN: 1473-4257
Titre abrégé: J Med Ethics
Pays: England
ID NLM: 7513619
Informations de publication
Date de publication:
05 2023
05 2023
Historique:
received:
19
04
2021
accepted:
23
05
2022
medline:
25
4
2023
pubmed:
23
6
2022
entrez:
22
6
2022
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 35732421
pii: medethics-2021-107512
doi: 10.1136/medethics-2021-107512
pmc: PMC9772357
mid: NIHMS1812274
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
305-310Subventions
Organisme : NIAID NIH HHS
ID : UM1 AI126620
Pays : United States
Organisme : NIAID NIH HHS
ID : R01 AI147821
Pays : United States
Organisme : NIDA NIH HHS
ID : DP2 DA051915
Pays : United States
Organisme : NIAID NIH HHS
ID : P01 AI169609
Pays : United States
Organisme : NIMH NIH HHS
ID : R25 MH067127
Pays : United States
Organisme : NIAID NIH HHS
ID : T32 AI007384
Pays : United States
Organisme : NIAID NIH HHS
ID : P30 AI036214
Pays : United States
Organisme : NIMH NIH HHS
ID : R21 MH118120
Pays : United States
Informations de copyright
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Déclaration de conflit d'intérêts
Competing interests: None declared.
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