‘He is now like a brother, I can even give him some blood’ – Relational ethics and material exchanges in a malaria vaccine ‘trial community’ in The Gambia

Abstract

This paper explores social relations within the ‘trial community’ (staff and volunteers) of a Malaria Vaccine Trial (MVT), implemented by the Medical Research Council (MRC) in The Gambia between 2001 and 2004. It situates ethical concerns with medical research within the everyday life of scientific fieldwork. Based upon discussions with volunteers and staff, we explore processes of mediation between scientific project and study population, and between formal ethics, local ethical debates and everyday practice. We observe that material contact and substantial transactions, notably of blood and medicine, are central to the construction of the MVT. These transactions are guided by a concrete and relational form of ethics, which contrasts with the abstract and vertical formal ethical principles underwriting the scientific study protocol. The success of the MVT owed much to these kinship-like ethics. One possible conclusion from these observations is that research ethics should be understood, not just as a quasi-legal frame but also as an open, searching movement, much in the same way that kinship is not merely a juridical institution and a prescriptive frame of rules, but a network made through relational work. However, this conclusion raises new problems: by contrasting formal, abstract principles to intimate, immediate relations, and economic justice to personal morality, we accept that the order of medical research is moved further out of the public and political, and into the domains of either quasi-legal claims or of private morality. Irrespective of the undeniable importance of clear-cut rules and of good face-to-face relations, a third essential foundation of medical research ethics is the democratically constituted public sphere, including equitable health services, and transparent institutions to facilitate open debate and regulate particular interests. Ultimately, the ethics of global science can rely neither on principles nor trust but requires citizenship and democratic government.

Introduction

Debates about the ethics of ‘overseas’ medical research, i.e. scientific research funded by institutions from wealthier countries, conducted in poor countries together with local institutions, have proliferated over the last decade. The discrepancy – in wealth, training, morbidity, medication and care – between donor and host countries in such collaborations is critical to medical research: medical trials require a high prevalence of diseases and low treatment coverage to be able to demonstrate effects of new treatments or interventions. In ethical debates about overseas research, high levels of disease and absence of health care are also linked to the argument that medical research, if it provides treatment to study populations during the trial period, has beneficial effects and is thus ethical. Difference is thus critical both to the validity of scientific aims and to their legitimacy. In this paper, we examine these differences – relations between diseased and non-diseased, those who have no cure and those who do, researchers and researched – on the occasion of a Malaria Vaccine Trial (MVT) conducted between 2001 and 2004 by the British Medical Research Council (MRC) in The Gambia. The trial's premature ending provided us with an opportunity to explore the MVT ethnographically, enriching bioethics by what Kleinman (1995) calls “positioned, intersubjective perspectives” and “institutional context” (p. 55). We focused on social relationships that fieldwork established within the ‘trial community’ (staff and volunteers), on the ethics guiding the everyday life of research, and how these relate to formal medical research ethics, as well as to the political-economic context of the trial.¹