Ethical frameworks and community engagement in HIV cure-related research at the end of life: looking back, moving forward

PURPOSE OF REVIEW: HIV cure-related research at the end-of-life has created a rare opportunity to study viral persistence in tissues that cannot be safely or repeatedly sampled during life. This review examines ethical frameworks and community engagement approaches in this field from 2016 to 2026, with attention to potential new scientific directions and implementation across diverse settings. RECENT FINDINGS: The literature has developed important recommendations on informed consent, autonomy, dignity, altruism, patient-participant-centeredness, next-of-kin/loved one involvement, staff coordination, rapid research autopsy, and tissue stewardship. Much of this work has emerged from the Last Gift program and related studies in the United States, with growing documented evidence from Canada and emerging biospecimen infrastructure work in Brazil. As the field expands toward novel approaches, such as organoids, organ-on-chip systems, ex vivo models, and possible in vivo testing of HIV cure-related research strategies, ethical questions increasingly extend to tissue transformation, future use, commercialization, acceptable risk, oversight, and long-term governance. SUMMARY: HIV cure-related research at the end-of-life has been ethically deliberate from the outset. The next task is to define the practices, safeguards, and engagement processes needed to conduct this work responsibly across more diverse cultural, legal, clinical, and community settings as scientific innovations evolve.