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Social Science Research with Acute HIV Cohort Seeks to Understand Volunteers' Perspectives

November 15, 2017

A new article published this week in the Journal of Medical Ethics reports on insights gleaned from in-depth interviews with members of an acute HIV infection cohort about their decision to participate in an HIV remission study with analytical treatment interruption.

The SEARCH10/RV254 cohort, which is headed by MHRP’s Dr. Jintanat Ananworanich, is an acute HIV cohort in Bangkok, Thailand made up of individuals who are diagnosed in the very early stages of HIV infection and begin antiretroviral therapy (ART) immediately. 

A subset of that cohort is asked to participate in early-phase trials that aim to generate knowledge relevant to an eventual “functional cure” of HIV, defined as long-term viral remission without ART. During these studies, volunteers are taken off ART to test the effects of a candidate intervention. This method, called analytical treatment interruption (ATI), involves uncertain and potentially high risk for volunteers.

New social science and ethics research, led by Dr. Gail Henderson, a professor of social medicine at the University of North Carolina School of Medicine, seeks to understand the decision-making process of SEARCH10/RV254 cohort members who agree and decline to participate in ATI studies. Dr. Henderson’s newly published article, the first to come from that research, reports on interviews conducted with 12 participants in the first ATI study called SEARCH 019. 

Interviews revealed central themes about volunteers’ decisions to join:

• Participants felt they possessed an important identity as members of the acute cohort, viewing their bodies as uniquely suited to both testing and potentially benefiting from HIV cure approaches.

• While acknowledging risks of ATI, most perceived they were given an opportunity to interrupt treatment, to test their own bodies and increase normalcy in a safe, highly monitored circumstance. 

• They were motivated by potential benefits to themselves, the investigators and larger acute cohort and others with HIV. 

• They believed their own trial experiences and being able to give back to the community were sufficient to offset participation risks.

Importantly, researchers found that volunteers’ perceived benefits may differ from the benefits imagined by researchers. “What we have learned so far is that the rationality of participant motivations cannot be fully captured by the image of 'weighing risks and benefits,'” the article co-authors wrote in an accompanying piece on the Journal of Medical Ethics blog. “One cannot presume that research-related risks and benefits are the same for everyone: what makes participation worthwhile for participants requires an understanding of their social circumstances and personal history.”

Planned future articles will address the thoughts and reasoning of members of the cohort who decline to participate in ATI studies.

A central tenet of MHRP's work towards curing HIV is to conduct social and behavioral research in conjunction with treatment interruption studies in an ongoing effort to ensure their ethicality.