Precarious subjects: Ethics and etiquette in an Ebola vaccine trial in Liberia

This thesis combines anthropology, development studies and bioethics as it seeks to learn from trial subjects what bioethics amounts to in practice. It is focusses on the case of an Ebola vaccine trial launched in West Africa at the peak of the 2014 outbreak. Against the odds, that trial implemented the best available models of bioethics and actively sought to be participant-centred. Even so, trial subjects were not cared for as much and as one might hope for. To open up a dialogue about this, each of the chapters singles out a specific concern. Chapters 1 and 2 show that contrary to the expectations incorporated in bioethics, the participants of the trial were not motivated by altruism, but seeking labour, however precarious. Chapter 3 argues that notions like ‘myths’ and ‘misconceptions’ that circulate in bioethics are reproductions of colonial accounts of inferior people and their inferior knowledge. Chapter 4 details how the ambition of collaborative partnerships to alleviate stigma against trial subjects miserably failed. Chapter 5 rekindles the notion of ‘bioetiquette’ to demonstrate that research protocols imply a series of moralised behavioural rules for trial subjects. The conclusion reiterates the overriding concern that bioethics-in-practice is unwittingly transforming into a set of operational procedures emptied out of ‘ethics’. It argues that to remedy this, we need to acknowledge power differences, respect differences in knowledge traditions and ways of life, and face what alters in situations marked by precarity