Building trust before building a program: community lessons from the last gift HIV end-of-life research program

PURPOSE OF REVIEW: Scientific advances in HIV research at the end of life depend on more than innovative study designs and laboratory infrastructure; they depend on trust. While considerable attention has been devoted to the ethics, logistics, and scientific value of rapid research autopsy programs, far less has been written from the perspective of the communities who help shape and participate in them. RECENT FINDINGS: Drawing on our collective experience as members of the HIV community helping to develop and guide the Last Gift Program at UC San Diego, we share practical lessons learned alongside participants, loved ones, community advocates, and research partners. These experiences informed our application of the Circle of Trust to HIV research at the end of life, illustrating how trust is built, shared, sustained, and ultimately returned to the community. SUMMARY: We identify lessons related to community engagement, autonomy, individual motivations, engagement with loved ones, and responsible stewardship, and offer guidance for developing end-of-life research programs grounded in authentic community partnership.