Tracing an Anthropology of HIV Data in the Era of Treatment as Prevention
In the contemporary United States, nearly all healthcare events generate data in electronic medical records. This is especially true for people living with HIV, whose routine bloodwork data are transmitted to state and local departments of public health and then re-used in epidemiology and prevention. Reuses of clinical HIV data by public health agencies are done without consent from people living with HIV. The increased utilization of clinical HIV data in public health prevention is designed to support "treatment as prevention" strategies, following confirmation that antiretroviral therapies for HIV are an effective way to prevent sexual transmission. In this talk, I describe the ethics and implementation of programs designed to support HIV treatment as prevention. I draw on over two years of fieldwork in the HIV/AIDS and LGBTQ health safety nets in metropolitan Atlanta and an archive of health policy grey literature. I describe programs that identify, investigate, and contact people living with HIV who are "out of care" or who are part of "clusters" of other people with strains of HIV that are closely related at the viral genetic level. These programs aim to bring people living with HIV who are not in care into treatment, thus advancing treatment as prevention goals. While these aims are laudable, I argue that programs which re-use clinical HIV data for direct prevention are presently out of alignment with the public health mandate to balance individual rights and respect for persons against the public good. They should be reformed to incorporate mechanisms for consent and refusal. Such changes would help give people living with HIV greater agency over how their health data are re-used, and thus over their own wellbeing.
Stephen Molldrem is a President's Postdoctoral Fellow in the University of California, Irvine Department of Anthropology. His research focuses on the politics of sexuality, HIV/AIDS, digital health, and bioethics. He received his PhD in American Culture with a Certificate in Science, Technology, and Society from the University of Michigan in 2019.