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Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life.
Kanazawa, John; Rawlings, Stephen A; Hendrickx, Steven; Gianella, Sara; Concha-Garcia, Susanna; Taylor, Jeff; Kaytes, Andy; Patel, Hursch; Ndukwe, Samuel; Little, Susan J; Smith, Davey; Dubé, Karine.
Afiliação
  • Kanazawa J; Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
  • Rawlings SA; Department of Medicine, University of California San Diego, La Jolla, California, USA.
  • Hendrickx S; AntiViral Research Center, University of California San Diego, San Diego, California, USA.
  • Gianella S; AntiViral Research Center, University of California San Diego, San Diego, California, USA.
  • Concha-Garcia S; Department of Medicine, University of California San Diego, La Jolla, California, USA.
  • Taylor J; AntiViral Research Center, University of California San Diego, San Diego, California, USA.
  • Kaytes A; AntiViral Research Center, University of California San Diego, San Diego, California, USA.
  • Patel H; HIV Neurobehavioral Research Program (HNRP), California NeuroAIDS Tissue Network (CNTN), University of California San Diego, San Diego, California, USA.
  • Ndukwe S; HIV + Aging Research Program - Palm Springs (HARP-PS), Palm Springs, California, USA.
  • Little SJ; AntiViral Research Center Community Advisory Board, University of California San Diego, La Jolla, California, USA.
  • Smith D; AntiViral Research Center Community Advisory Board, University of California San Diego, La Jolla, California, USA.
  • Dubé K; Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
J Med Ethics ; 49(5): 305-310, 2023 05.
Article em En | MEDLINE | ID: mdl-35732421
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.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Infecções por HIV / Morte Tipo de estudo: Guideline Limite: Humans Idioma: En Revista: J Med Ethics Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Estados Unidos

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Infecções por HIV / Morte Tipo de estudo: Guideline Limite: Humans Idioma: En Revista: J Med Ethics Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Estados Unidos