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

Abstract

In 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 practicephylogenetic 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.

Insights into HIV-1 Transmission Dynamics Using Routinely Collected Data in the Mid-Atlantic United States

“…Lastly, there has been a mixed response to using molecular epidemiology to characterize transmission dynamics both in the scientific community and among advocacy groups [ 44 , 45 , 46 , 47 ]. It remains critical to assess any presumed negative consequences.…”

Public health use of HIV phylogenetic data in sub-Saharan Africa: ethical issues

“…This can affect livelihoods, social standing, mental health and/or increase HIV transmission risks 6. Increasing awareness of the accuracy of molecular source attribution may undermine trust in public health (discussed below), which may in turn result in some people disengaging with further testing and treatment, potentially increasing risks of transmission 1…”

“…Sequencing of the viral genome of HIV infections enables molecular and/or phylogenetic analyses of the relationships between viruses for public health and research purposes (table 1). 1 2 This paper provides a preliminary analysis of ethical issues associated with uses of HIV phylogenetics in population health research and public health practice, with a focus on sub-Saharan African settings. We aim to contribute to ongoing consultations regarding appropriate governance policies for the use of HIV phylogenetics in public health contexts.…”

“…Worldwide, there has been a growing interest in the role of phylogenetic analysis in public health responses, including during the COVID-19 pandemic. There have also been increasing concerns, including among people living with HIV, that such analyses may result in greater infringements of human rights 1. Sub-Saharan African datasets and phylogenetic expertise have been prominent in previous analyses of HIV3 4 and in the recent COVID-19 pandemic 5…”

We Are People, Not Clusters!

“…We have elaborated our concerns on the ethical implications and potential harms MHS poses to our communities, in academic fora (Bernard et al 2007;Chung et al 2019;Dawson et al 2020;Gilbert et al 2016;McClelland et al 2019;Nelson 2020), as public education initiatives (Legacy Project 2019; Sero Project 2020), in the media (Kempner 2019;Nelson 2020), and as protests (Artavia 2019). The critique of MHS has similarly been advanced by other scholars and activists concerned by the ethical challenges it poses (Benbow and Evans 2017;Coltart et al 2018;Gilbert et al 2016;Mutenherwa et al 2019;Sandset 2020).…”