Date Published:
2024 Feb

Publication Type:
Journal Article

Authors:

Samuel O Ndukwe
Hursch Patel
Brittany Shelton
Susanna Concha-Garcia
Cheryl Dullano
Stephanie Solso
Steven Hendrickx
Patricia K Riggs
Thomas J Villa
Andy Kaytes
Jeff Taylor
Susan J Little
David Lessard
Anish K Arora
Cecilia T Costiniuk
Shadi Eskaf
Davey M Smith
Sara Gianella
Karine Dubé

PMID:
37861674

URL:
https://pubmed.ncbi.nlm.nih.gov/37861674/

DOI:
10.1097/QAD.0000000000003754

Abstract:
Introduction: The Last Gift study at the University of California San Diego (UCSD), United States enrolls terminally ill people with HIV (PWH) in HIV cure research. Methods: From 2017 to 2022, we conducted surveys with Last Gift participants and their next-of-kin/loved ones to evaluate willingness to participate in different types of HIV cure research at the end of life (EOL). We analyzed willingness data descriptively. Results: We surveyed 17 Last Gift participants and 17 next-of-kin/loved ones. More than half of Last Gift participants ( n = 10; 58.8%) expressed willingness to participate in studies involving totally new treatments or approaches ('first-in-human' studies), a combination of different approaches, the use of unique antibodies, proteins or molecules, or therapeutic vaccines. Under one-quarter of Last Gift participants ( n = 4; 23.5%) expressed willingness to participate in research involving interventions that may shorten their life expectancy to benefit medical research. Most Last Gift participants and their next-of-kin/loved ones also expressed high acceptance for various types of donations and biopsies at the EOL (e.g. hair donations and skin, lymph node or gut biopsies). Discussion: Knowing whether people would be willing to participate in different types of EOL HIV cure research can help inform the design of future innovative studies. As a research community, we have a duty to design studies with adequate safeguards to preserve the public trust in research and honor PWH's important gift to humanity.