Login Register Cart 0
Generic placeholder image

Current HIV Research

Editor-in-Chief

ISSN (Print): 1570-162X
ISSN (Online): 1873-4251

Back
Journal Home About Journal Editorial Board Journal Insight Current Issue Volumes/Issues
Subscribe
Case Report

Donating One’s Body to HIV Cure Research Through Canadian Medical Assistance in Dying: A Case Study

Author(s): David Lessard*, Bertrand Lebouché, André Morneau, Martin Bilodeau, Ron Rosenes, Justin Sanders, Nicolas Chomont, Patrick Keeler, Karine Dubé, Shari Margolese, Mohammad Ali Jenabian, Christopher Power, Jean-Pierre Routy, Jonathan B. Angel, Éric A. Cohen and Cecilia T. Costiniuk

Volume 21, Issue 4, 2023

Published on: 10 October, 2023

Page: [264 - 267] Pages: 4

DOI: 10.2174/1570162X21666230904150923

Price: $65

conference banner
Abstract

Background: Finding a cure for HIV is challenged by persisting reservoirs, the mapping of which necessitates invasive procedures. Inviting people with HIV (PWHIV) at the end of life to donate body specimens post-mortem through research autopsies is a novel approach, raising ethical concerns.

Objective: This case study aims to explore the motivations, barriers, and facilitators of a terminally-ill Canadian PWHIV who requested medical assistance in dying (MAID) and expressed interest in donating his body for HIV cure research.

Case Presentation: An in-depth 3-hour and semi-structured interview was conducted with the participant. The interview transcription was thematically coded to identify motivations and perceived barriers and facilitators to participate in end-of-life HIV cure research. Our analysis identified six themes. Two themes expressed motivations: Collaboration in progress in health and science, seeing cure research as collaboration with professionals; and Opportunity to learn more, mostly about science and health. One theme expressed a barrier: Losing interest in or identification with long-term care research matters, especially those related to the management of long-term care. Three themes expressed by facilitators: Receiving information from professionals one trusts and knows, especially clinical and research teams; Perceiving research procedures as simple, useful, and embedded in care, perceiving clinical, educational, and interpersonal benefits that surpass costs of participation; and Perceiving research as one last way to contribute, that is, feeling useful or give back.

Conclusion: Several circumstances facilitated the patient’s participation: being a single man, having time to participate, having no strong religious belief, and valuing clear, direct communication. His motivations to participate in HIV cure research were altruistic, and also an experience of working with clinical and research teams. Finally, this perspective highlights HIV cure research participant candidates’ need for education about research procedures.

Keywords: HIV, cure research, research at the end of life, medical assistance in dying, tissue donation

« Previous Next »
Graphical Abstract

[1]
Knobel H, Domingo P, Suarez-Lozano I, et al. Rate of cardiovascular, renal and bone disease and their major risks factors in HIV-infected individuals on antiretroviral therapy in Spain. Enferm Infecc Microbiol Clin 2019; 37(6): 373-9.
[http://dx.doi.org/10.1016/j.eimce.2018.09.005] [PMID: 30389268]
[2]
Cohn LB, Chomont N, Deeks SG. The biology of the HIV-1 latent reservoir and implications for cure strategies. Cell Host Microbe 2020; 27(4): 519-30.
[http://dx.doi.org/10.1016/j.chom.2020.03.014] [PMID: 32272077]
[3]
Chaillon A, Gianella S, Dellicour S, et al. HIV persists throughout deep tissues with repopulation from multiple anatomical sources. J Clin Invest 2020; 130(4): 1699-712.
[http://dx.doi.org/10.1172/JCI134815] [PMID: 31910162]
[4]
Estes JD, Kityo C, Ssali F, et al. Defining total-body AIDS-virus burden with implications for curative strategies. Nat Med 2017; 23(11): 1271-6.
[http://dx.doi.org/10.1038/nm.4411] [PMID: 28967921]
[5]
Mehraj V, Ghali P, Ramendra R, et al. The evaluation of risk-benefit ratio for gut tissue sampling in HIV cure research. J Virus Erad 2017; 3(4): 212-7.
[http://dx.doi.org/10.1016/S2055-6640(20)30316-2] [PMID: 29057085]
[6]
Planas D, Zhang Y, Monteiro P, et al. HIV-1 selectively targets gut-homing CCR6+CD4+ T cells via mTOR-dependent mechanisms. JCI Insight 2017; 2(15): e93230.
[http://dx.doi.org/10.1172/jci.insight.93230] [PMID: 28768913]
[7]
Costiniuk CT, Salahuddin S, Farnos O, et al. HIV persistence in mucosal CD4+ T cells within the lungs of adults receiving long-term suppressive antiretroviral therapy. AIDS 2018; 32(16): 2279-89.
[http://dx.doi.org/10.1097/QAD.0000000000001962] [PMID: 30102653]
[8]
Joseph SB, et al. HIV-1 RNA detected in the CNS after years of suppressive antiretroviral therapy can originate from a replicating CNS reservoir or clonally expanded cells. Clin Infect Dis 2018.
[9]
The Last Gift Study Team Available from: http://lastgift.ucsd.edu/[accessed December 10 2021].
[10]
Perry KE, Dubé K, Concha-Garcia S, et al. “My Death Will Not [Be] in Vain”: Testimonials from last gift rapid research autopsy study participants living with HIV at the end of life. AIDS Res Hum Retroviruses 2020; 36(12): 1071-82.
[http://dx.doi.org/10.1089/aid.2020.0020] [PMID: 32449625]
[11]
Gianella S, Taylor J, Brown TR, et al. Can research at the end of life be a useful tool to advance HIV cure? AIDS 2017; 31(1): 1-4.
[http://dx.doi.org/10.1097/QAD.0000000000001300] [PMID: 27755112]
[12]
CANFAR CanCURE. 2021. Available from:https://canfar.com/new_cancure_website/
[13]
Hooper JE. Rapid autopsy programs and research support: The Pre– and Post–COVID-19 environments. AJSP Rev Rep 2021; 26(2): 100-7.
[http://dx.doi.org/10.1097/PCR.0000000000000435] [PMID: 33718610]
[14]
Shrestha R, Kanchan T, Krishan K. Methods Of Estimation Of Time Since DeathStatPearls. Treasure Island, FL: StatPearls Publishing LLC 2022.
[15]
Government of Canada Medical assistance in dying. 2021. Available from:https://canfar.com/new_cancure_website/
[16]
Sandstrom TS, Burke Schinkel SC, Angel JB. Medical assistance in death as a unique opportunity to advance HIV cure research. Clin Infect Dis 2019; 69(6): 1063-7.
[http://dx.doi.org/10.1093/cid/ciz068]
[17]
Dubé K, Taylor J, Sylla L, et al. ‘Well, It’s the Risk of the Unknown… Right?’: A qualitative study of perceived risks and benefits of HIV cure research in the United States. PLoS One 2017; 12(1): e0170112.
[http://dx.doi.org/10.1371/journal.pone.0170112] [PMID: 28122027]
[18]
Vásquez JJ, Hunt PW. Participating in human immunodeficiency virus cure research at the end of life. Clin Infect Dis 2019; 69(6): 1068-70.
[http://dx.doi.org/10.1093/cid/ciz070] [PMID: 30715193]
[19]
Dubé K, Gianella S, Concha-Garcia S, et al. Ethical considerations for HIV cure-related research at the end of life. BMC Med Ethics 2018; 19(1): 83.
[http://dx.doi.org/10.1186/s12910-018-0321-2] [PMID: 30342507]
[20]
Kanazawa J. Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life. J Med Ethics 2022.
[PMID: 35732421]
[21]
Morain SR, Joffe S, Largent EA. When is it ethical for physician-investigators to seek consent from their own patients? Am J Bioeth 2019; 19(4): 11-8.
[http://dx.doi.org/10.1080/15265161.2019.1572811] [PMID: 30994425]
[22]
Lessard D, Dubé K, Bilodeau M, et al. Willingness of older Canadians with HIV to participate in HIV cure research near and after the end of life: A mixed-method study. AIDS Res Hum Retroviruses 2022; 38(8): 670-82.
[http://dx.doi.org/10.1089/aid.2022.0006] [PMID: 35778845]
[23]
Radio-Canada Découverte: Épisode du dimanche 27 novembre 2022 2022. Available from:https://ici.radio-canada.ca/tele/decouverte/site/episodes/670604/decouverte-sida-pandemie-epidemie-maladie?fbclid=IwAR1_3CPpZLSMrlYNn4xMqmINNG_cafSyqdtJKHd6i21egExRLmbSHekagbI [Accessed on: Dec 20, 2022]
[24]
Power J, Westle A, Dowsett GW, et al. Perceptions of HIV cure research among people living with HIV in Australia. PLoS One 2018; 13(8): e0202647.
[http://dx.doi.org/10.1371/journal.pone.0202647] [PMID: 30142171]
[25]
Evans D. An activist’s argument that participant values should guide risk–benefit ratio calculations in HIV cure research. J Med Ethics 2017; 43(2): 100-3.
[http://dx.doi.org/10.1136/medethics-2015-103120] [PMID: 28062651]

Rights & Permissions Print Cite
Article Metrics
39
2
Wayfinder Image
© 2024 Bentham Science Publishers | Privacy Policy