Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 May 24;8(1):1-16.
doi: 10.20411/pai.v8i1.583. eCollection 2023.

A Community-Driven Framework to Prioritize the Use of Donated Human Biological Materials in the Context of HIV Cure-Related Research at the End of Life

Karine Dubé  1   2   3 , Thomas J Villa  4   5 , Jeff Taylor  5   6   7 , Andy Kaytes  5   7 , David J Moore  8 , Susan J Little  1   2 , Antoine Chaillon  1 , Davey M Smith  1   2 , Sara Gianella  1   2
Affiliations

A Community-Driven Framework to Prioritize the Use of Donated Human Biological Materials in the Context of HIV Cure-Related Research at the End of Life

Karine Dubé et al. Pathog Immun. .

Abstract

Initiated in 2017 after extensive community engagement, the Last Gift program enrolls altruistic volunteers willing to donate their cells and tissues at the end of life to allow studies on HIV reservoir dynamics across anatomical sites. As the Last Gift team received tissue requests outside the scope of HIV cure research, we noticed the absence of guiding frameworks to help prioritize the use of altruistically donated human biological materials. In this commentary, we present a proposed framework for prioritizing the use of donated human biological materials within and outside the end-of-life (EOL) HIV cure research context, using the Last Gift study as an example. First, we discuss regulatory and policy considerations, and highlight key ethical values to guide prioritization decisions. Second, we present our prioritization framework and share some of our experiences prioritizing requests for donated human biological materials within and outside EOL HIV cure research.

Keywords: End of life; HIV cure research; donations; ethics; human biological materials; immunity; pathogens; tissues; virology.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1.
Figure 1.
Ethical values and considerations.
Figure 2.
Figure 2.
Community-driven framework to prioritize use of donated human biological materials in the context of HIV cure-related research at the end of life.
See this image and copyright information in PMC

References

    1. Palella FJ, Jr., Delaney KM, Moorman AC, Loveless MO, Fuhrer J, Satten GA, Aschman DJ, Holmberg SD. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J Med. 1998;338(13):853–60. doi: 10.1056/NEJM199803263381301. PubMed PMID: 9516219. - DOI - PubMed
    1. Brown B, Marg L, Cabral A, Didero M, Christensen C, Taylor J, Subica A. Community-Driven Health Priorities for Healthy Aging With HIV. J Assoc Nurses AIDS Care. 2019;30(1):119–28. doi: 10.1097/JNC.0000000000000042. PubMed PMID: 30586089. - DOI - PubMed
    1. Goodkin K, Kompella S, Kendell SF. End-of-Life Care and Bereavement Issues in Human Immunodeficiency Virus-AIDS. Nurs Clin North Am. 2018;53(1):123–35. doi: 10.1016/j.cnur.2017.10.010. PubMed PMID: 29362056; PMCID: PMC5837059. - DOI - PMC - PubMed
    1. Perry KE, Dubé K, Concha-Garcia S, Patel H, Kaytes A, Taylor J, Javadi SS, Mathur K, Lo M, Brown B, Sauceda JA, Wohl DA, Little S, Hendrickx S, Rawlings SA, Smith DM, Gianella S. “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. Epub 2020June24. doi: 10.1089/AID.2020.0020. PubMed PMID: 32449625; PMCID: PMC7703253. - DOI - PMC - PubMed
    1. Gianella S, Taylor J, Brown TR, Kaytes A, Achim CL, Moore DJ, Little SJ, Ellis RJ, Smith DM. Can research at the end of life be a useful tool to advance HIV cure? AIDS. 2017;31(1):1–4. doi: 10.1097/QAD.0000000000001300. PubMed PMID: 27755112; PMCID: PMC5137789. - DOI - PMC - PubMed