PT  - JOURNAL ARTICLE
AU  - John Kanazawa
AU  - Stephen A Rawlings
AU  - Steven Hendrickx
AU  - Sara Gianella
AU  - Susanna Concha-Garcia
AU  - Jeff Taylor
AU  - Andy Kaytes
AU  - Hursch Patel
AU  - Samuel Ndukwe
AU  - Susan J Little
AU  - Davey Smith
AU  - Karine Dubé
TI  - Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life
AID  - 10.1136/medethics-2021-107512
DP  - 2022 Jun 22
TA  - Journal of Medical Ethics
PG  - medethics-2021-107512
4099  - http://jme.bmj.com/content/early/2022/06/21/medethics-2021-107512.short
4100  - http://jme.bmj.com/content/early/2022/06/21/medethics-2021-107512.full
AB  - 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.No data are available. This paper details ethical reflections and documented lessons learned. As such, no data are available.