What Are Some of the Social Dimensions of HIV Cure Research?
September 16, 2016
With HIV cure-related research in its infancy on the African continent, Keymanthri Moodley, MBChB, of Stellenbosch University is already contributing to the ethical foundation of this nascent area. Moodley and colleagues analyzed data from in-depth interviews and focus groups with stakeholders in the HIV realm, including people living with HIV, community advisory board members, clinicians, researchers and pharmaceutical professionals, regarding the social and ethical dimensions of proposed cure research.
One key finding was respondents' assertion of the need to regard the informed consent process as not just an educational mandate but also a counseling process: incorporating more dialogue and even a psychiatric evaluation of participants to assess their decision-making around entering a cure-related study and their ability to cope with the results. Moodley noted that activists have highlighted the importance of painting a full picture of the protracted process and extensive long-term follow-up that study participation entails.
Also crucial to informed consent is an understanding of terms across diverse audiences. Moodley identified existing, widespread misunderstanding as to the nature of an HIV "cure." For instance, some people equate a low viral load with being cured while others advance "cure" as a holistic process including psychological and social healing of which a biomedical cure would be but one part.
Overall, Moodley and colleagues embrace the need to begin engaging community members at this early stage, and they have begun to create educational materials about HIV cure research that are integrated with treatment and prevention information.
"Usually what happens is that the ethics follows the science," Moodley noted during the Q&A. "In this particular instance, the NIH [U.S. National Institutes of Health] has already started funding the ethical and social issues ahead of the science, which is great."
With HIV cure research on the horizon, explore some of the other top ethical questions being asked in advance here
Olivia G. Ford is a contributing editor for TheBody.com and TheBodyPRO.com.
This article was provided by TheBodyPRO. It is a part of the publication The 21st International AIDS Conference (AIDS 2016).
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