Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action

<b>Introduction:</b> End-of-life (EOL) HIV cure-related research offers a unique opportunity to advance scientific discovery while honoring the values, dignity, and legacy of people with HIV. However, participation remains demographically skewed, mirroring long-standing inequities in who is informed, invited, and supported to take part. Synthesizing eight years of experience, published literature reviews, and community engagement from the University of California San Diego's Last Gift program, we propose strategies to embed justice, equity, diversity, inclusion, and accessibility (JEDIA) throughout the design and implementation of EOL HIV cure-related studies. <b>Discussion:</b> Using intersectionality as a structural analytic framework, we examine how interlocking systems and social determinants shape access, consent, and participant experience, and we translate ethics into action across three themes and eight domains. As examples, we facilitate equitable access by implementing solutions that address gaps limiting awareness and feasibility of participation. We establish ongoing consent through multi-session consent processes with teach-back methods, clear healthcare proxy pathways, and explicit separation of research activities from clinical care. We center lived experiences by partnering with people with HIV and community groups, customizing participation, and honoring cultural and spiritual needs. We enable real-time course correction by using a dashboard that monitors enrollment patterns and representation. <b>Conclusions:</b> An intersectionality-informed, participant-centered approach is both feasible and essential to ensure HIV cure-related research advances with fairness, trust, and global relevance. Programs such as the Last Gift show that scientific rigor, integrity, and participant dignity can coexist, establishing a model for equitable HIV cure discovery.

Authors

Institutions

Publication Details

Journal
International Journal of Environmental Research and Public Health
Published
2026-02-27
DOI
https://doi.org/10.3390/ijerph23030295
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action

S. Gianella, Samuel Ndukwe, Bridgette Picou, Robert Deiss et al.
International Journal of Environmental Research and Public Health
Ethics in Clinical Research
article

Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action

S. Gianella, Samuel Ndukwe, Bridgette Picou, Robert Deiss, Brittany A. Shelton, Leslie Matherne, Stephanie Solso, Taylor Jeff, Whitney Tran, Rachel Lau, Malachi Keo, Antoine Chaillon, Cheryl Dullano, Kris H. Oliveira, Renato Bobadilla-Leon, Alejandra Mortlett-Paredes, Karine Dubé, Ali Ahmed
article en

Abstract

<b>Introduction:</b> End-of-life (EOL) HIV cure-related research offers a unique opportunity to advance scientific discovery while honoring the values, dignity, and legacy of people with HIV. However, participation remains demographically skewed, mirroring long-standing inequities in who is informed, invited, and supported to take part. Synthesizing eight years of experience, published literature reviews, and community engagement from the University of California San Diego's Last Gift program, we propose strategies to embed justice, equity, diversity, inclusion, and accessibility (JEDIA) throughout the design and implementation of EOL HIV cure-related studies. <b>Discussion:</b> Using intersectionality as a structural analytic framework, we examine how interlocking systems and social determinants shape access, consent, and participant experience, and we translate ethics into action across three themes and eight domains. As examples, we facilitate equitable access by implementing solutions that address gaps limiting awareness and feasibility of participation. We establish ongoing consent through multi-session consent processes with teach-back methods, clear healthcare proxy pathways, and explicit separation of research activities from clinical care. We center lived experiences by partnering with people with HIV and community groups, customizing participation, and honoring cultural and spiritual needs. We enable real-time course correction by using a dashboard that monitors enrollment patterns and representation. <b>Conclusions:</b> An intersectionality-informed, participant-centered approach is both feasible and essential to ensure HIV cure-related research advances with fairness, trust, and global relevance. Programs such as the Last Gift show that scientific rigor, integrity, and participant dignity can coexist, establishing a model for equitable HIV cure discovery.

International Journal of Environmental Research and Public HealthVol. 23(3)
East Tennessee State University (US), Knoxville College (US), University of California San Diego (US), Massachusetts General Hospital (US), Desert AIDS Project (US), Instituto de Medicina Tropical (PY), HOPE Clinic (US), University of Tennessee at Knoxville (US)
Fondation Brocher, Philadelphia Foundation, National Institutes of Health, Center for AIDS Research, University of Washington, University of California, San Diego, National Institute on Aging, National Heart, Lung, and Blood Institute, National Institute of Mental Health, National Institute on Drug Abuse, National Cancer Institute, National Institute of Nursing Research, National Institute of Allergy and Infectious Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, National Institute of Dental and Craniofacial Research, National Institute on Minority Health and Health Disparities, Sam and Rose Stein Institute for Research on Aging
Reduced inequalities
Openalex Percentile: Top 44%
Ethics in Clinical Research
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.