Remaking Biomedical Sexualities: Health Technologies and the Governance of HIV in the United States

Abstract

This dissertation shows that recent U.S. federal health information technology (IT) policies aimed at digitizing the health sector have been key drivers of basic changes in how sexual and gender minorities and people living with HIV are conceptualized and managed in a variety of health contexts. Knowledge that HIV treatment is an efficacious form of prevention, the incorporation of sexual orientation and gender identity into the national health architecture, and the development of a nationwide health IT infrastructure by the U.S. Department of Health and Human Services (HHS) have collectively altered the parameters around which lesbian, gay, bisexual, transgender, and queer (LGBTQ) people and people living with HIV receive clinical and public health services. The project demonstrates how these developments are remaking “biomedical sexualities:” sexualities as they become constituted as objects of knowledge and intervention in healthcare.

In the 2010s, the sexualities of people living with HIV have been reframed through a new focus on ensuring their continuous engagement in medical care as a mode of preventing HIV transmission. Since the mid-1990s, the suppression of viral load through the prescription of antiretroviral medications has been the key method for treating HIV. However, in the 2010s, viral suppression has also been promoted as the primary way to stop HIV transmission, especially via sexual routes. Thus, “treatment as prevention” has become a key tool in plans to “End AIDS” and for mitigating sexual risk in the governance of HIV. Utilizing the national health IT infrastructure, clinical and public health interventions have been constructed to keep people living with HIV engaged in care and to re-link individuals identified as out of care to providers. LGBTQ health advocates have also contributed to remaking biomedical sexualities during the 2010s, largely through efforts to regularize the collection and utilization of sexual orientation and gender identity data.

In six chapters, the dissertation documents transformations in the governance of HIV and describes the incorporation of LGBTQ health advocates’ interests across branches of HHS from 2009-2017. The project emphasizes how new strategies for managing HIV and LGBTQ health have been effectuated through the nationwide health IT infrastructure, which has been built primarily through the dissemination of federal policy directives and economic incentives. Each chapter also explores the effects of federal policies on specific communities of practice, drawing on ethnographic fieldwork conducted in metropolitan Atlanta’s HIV safety net and LGBTQ health communities from August 2016 to early 2019, at international conferences, and at an LGBTQ clinic and research institute in Boston.

Chapters also delineate ethical and policy problems raised by developments in U.S. health IT. Key cases include the adoption of sexual orientation and gender identity standards by HHS that employ outdated terminology in the underlying architecture to describe transgender and gay/lesbian people, and radical misalignments in HHS policies regarding when people living with HIV should be able to control the exchange of their HIV data. The project also problematizes notions of digital automation in healthcare by highlighting several health IT systems’ ongoing reliance on low-waged labor performed predominantly by women of color to facilitate interoperability between infrastructures. “Remaking Biomedical Sexualities” is situated in Sexuality Studies, LGBTQ studies, Science and Technology Studies (STS), and Data Studies. It makes contributions to each of these fields and will also be of interest to practitioners in HIV/AIDS, LGBTQ health, health IT, and bioethics.