The ethical and epistemological pitfalls of translating phylogenetic HIV testing: from patient-centered care to surveillance

Abstract

AbstractIn both HIV science and public health policy, efforts to end the HIV epidemic are increasingly focusing on molecular HIV surveillance as a helpful tool for identifying, intervening in and controlling the disease. HIV surveillance is meant to identify clusters of genetically similar viral strains in near real-time in communities and areas where transmissions occur, and then to intervene by means of enhanced public health approaches. This article critically engages with how molecular HIV surveillance—a practice and technology portrayed as a benign public health intervention—empties and purifies many of the social and political contexts of HIV transmissions. McClelland et al. (Crit Public Health 1–7, 2019) see the rise of molecular HIV surveillance as a form of “repurposing” of clinical phylogenetic testing done in the context of HIV care. In this article, I argue that this so-called repurposing can be understood as a form of “translation”. Looking at how phylogenetic HIV testing has been translated from clinical, patient-centered use to a form of molecular HIV surveillance, I seek to map some of the potential ethical and epistemological pitfalls of such a translational process. More specifically, I look at the unintended consequences of translating a particular evidence-based practice—phylogenetic HIV testing—from one usage to another. To this end, I engage with Michel Foucault and his work on the biopower of medicine, exploring how such power disciplines subjects into undergoing a form of medical surveillance that influences norms and behaviors. Ultimately, I argue that the translation of phylogenetic testing from patient-centered care in the clinic to a form of epidemiological surveillance needs to be critically examined in order to avoid ethical and potentially detrimental consequences for HIV-affected communities.