title: An activist's argument that participant values should guide risk-benefit ratio calculations in HIV cure research.
abstract: The patient empowerment movement, spurred by AIDS activism in the 1980s, quickly evolved to encompass how study participants are considered and treated in clinical research. Initially, people fearing death of AIDS sought early access to experimental medications that had not undergone rigorous testing in hopes of extending their lives. Thirty years on, scientists are asking a different set of ethical questions about clinical research, this time in the pursuit of either a sterilising cure or long-term remission for HIV. Instead of hastening access to experimental drugs for the sickest, researchers are now testing interventions for eradicating or controlling the virus in typically very healthy HIV-positive individuals who have the most to lose from such interventions if something goes wrong. While clinical researchers and ethicists debate the merits and limits of this type of research they should avoid discounting altruistic motivations as a powerful factor in a prospective study participant's decisions to assume risks. My conversations with four men who participated in HIV cure studies confirmed the capacity of these people to make carefully considered decisions about risks and the sometimes substantial influence/sway of non-clinical benefits that may come from participation in cure-oriented research. Studies must undergo ethical and clinical review before proceeding, and not all participants of such studies will be able to weigh or understand risks and benefits as those profiled here. But respecting the self-agency of people living with HIV should be a goal in the design and conduct of cure research.
authors.forename: David
authors.initials: D
authors.lastname: Evans
mesh_terms: D016915:AIDS Vaccines; D001291:Attitude of Health Personnel; D035843:Biomedical Research / Q000941:ethics; D032882:Comprehension / Q000941:ethics; D060740:Disease Eradication / Q000379:methods; D015658:HIV Infections / Q000517:prevention & control*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D010358:Patient Participation; D028701:Patient Rights / Q000941:ethics; D018579:Patient Selection / Q000941:ethics; D018570:Risk Assessment; D036302:Therapeutic Human Experimentation / Q000941:ethics
chemical_list: D016915:AIDS Vaccines
keywords: Clinical trials; Decision-making; HIV Infection and AIDS; Patient perspective