Year: 2026
Type: article
Abstract: Introduction: 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. Discussion: 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. Conclusions: 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: Ali Ahmed, Brittany Shelton, Malachi P. Keo, Kris H. Oliveira, Alejandra Mortlett-Paredes, Whitney Tran, Samuel O. Ndukwe, Jeff Taylor, Thomas J. Villa, Bridgette Picou, Leslie D. Matherne, Renato Bobadilla-Leon, Rachel Lau, Stephanie Solso, Cheryl Dullano, Davey Smith, Antoine Chaillon, Robert Deiss, Sara Gianella, Karine Dubé
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,016
Funders: 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
Awards: G3156338928, California NeuroAIDS Tissue Network, G3325645549, G342295615, G3789320706, G4636128709, G495691247, G6684298562, G7956391155, G8259150102, G9000052578, G9000090862, G9000124410, G9000306411, Leaving, Coming, and Staying HIV Obligate Microenvironments (HOME), San Diego Center for AIDS Research (SD CFAR)
OpenAlex ID: W7131786536