Disease, Morality and Bioethics: An Ethnographic Study of a TB Vaccine Trial Site in South Africa

Abstract

This thesis offers an ethnographic account of the work of a research institute called the South African Tuberculosis Vaccines Initiative (SATVI), which has been running tuberculosis (TB) vaccine trials in the Western Cape since 2001. The chapters show that SATVI has become deeply embedded in the local socioeconomic and healthcare landscape through the ground-level conduct of its vaccine trials. However, the significance of the trials in people’s lives goes beyond providing access to resources against the backdrop of withdrawing state structures. The focus is on how the trials have become entangled in people’s attempts to craft lives that they consider to be valuable, moral and respectable in conditions that have been rendered precarious by centuries of racialised domination, control and stereotyping.

The thesis firstly shows that that the post-apartheid health system has retained residues of authoritarianism through the democratic transition and that TB control focuses attention upon individual behaviour and lifestyles through the neoliberal language of ‘responsibility’. Against this backdrop, SATVI’s trials generated novel relationships and possibilities gravitating around the pursuit of the ‘greater good’ of a new TB vaccine and the bioethical ideal of the autonomous, rights-bearing ‘human subject’. Within these research relationships, participants not only felt valued, respected and included. Participants and research staff also engaged with health and wellbeing in ways that contest the common perception in the government clinics that residents are unwilling or unable to ‘take responsibly’ in matters of personal and community health. What emerges from this thesis is a moral economy surrounding trial participation that, firstly, challenges the bioethical construction of ‘vulnerability’. Secondly, it unsettles a tendency in social science research to emphasise the material dimensions of trial participation at the expense of a broader spectrum of imperatives and subject positions from which people approach and interpret medical science.