‘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.
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ABSTRACT: In Para-States and Medical Science, P. Wenzel Geissler and the contributors examine how medicine and public health in Africa have been transformed as a result of economic and political liberalization and globalization, intertwined with epidemiological and technological changes. The resulting fragmented medical science landscape is shaped and sustained by transnational flows of expertise and resources. NGOs, universities, pharmaceutical companies and other nonstate actors now play a significant role in medical research and treatment. But as the contributors to this volume argue, these groups have not supplanted the primacy of the nation-state in Africa. Although not necessarily stable or responsive, national governments remain crucial in medical care, both as employers of health care professionals and as sources of regulation, access, and – albeit sometimes counterintuitively - trust for their people. “The state” has morphed into the “para-state” — not a monolithic and predictable source of sovereignty and governance, but a shifting, and at times ephemeral, figure. Tracing the emergence of the “global health” paradigm in Africa in the treatment of HIV, malaria, and leprosy, this book challenges familiar notions of African statehood as weak or illegitimate by elaborating complex new frameworks of governmentality that can be simultaneously functioning and dysfunctional.Science and the para-state. Making global health in Africa, Edited by Geissler, Paul Wenzel, 01/2015: chapter 1: pages 1-46; Duke University Press., ISBN: 978-0-8223-5749-0
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ABSTRACT: Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers and fieldworkers (FWs) - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies. The findings reported here are from a broader social science study that explored the nature of interactions between fieldworkers and participants in two community based studies on the Kenyan Coast. Between January and July 2010, data were collected using participant observation, and through group discussions and in-depth interviews with 42 fieldworkers, 4 researchers, and 40 study participants. Participants highly appreciated the benefits provided by studies, particularly health care benefits. Fieldworkers were seen by participants and other community members as the gatekeepers and conduits of benefits, even though those were not their formal roles. Fieldworkers found it challenging to ignore participant and community requests for more benefits, especially in situations of extreme poverty. However, responding to requests by providing different sorts and levels of benefits over time, as inadvertently happened in one study, raised expectations of further benefits and led to continuous negotiations between fieldworkers and participants. Fieldworkers play an important intermediary role in research; a role imbued with multiple challenges and ethical dilemmas for which they require appropriate support. Further more specific empirical research is needed to inform the development of guidance for researchers on benefit sharing, and on responding to emergency humanitarian needs for this and other similar settings.BMC Medical Ethics 12/2014; 15(1):90. DOI:10.1186/1472-6939-15-90 · 1.60 Impact Factor
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ABSTRACT: In view, however, of the small size of the Gambia, its comparatively simple (though nonetheless pressing) problems. .. there would seem to be a strong argument for considering it as a case for the application of an overall research program. — Raymond Firth, " Social Problems and Research in British West Africa " A needle of swamp and arid savannah, the Gambia is the smallest country in Africa. It is a nation of riverbanks, running roughly two hundred miles east from the Atlantic Ocean and, at its widest, only thirty miles across. The Gambia is enveloped by Senegal and, though the British briefly pursued a policy of integration, its political sovereignty has remained unchallenged since it gained independence in 1964. The Gambia's relative political stability has been a draw for foreign aid; however, it remains one of the poorest countries in the world (undP 2010). It is also one of the most researched: the UK Medical Research Council (Mrc), whose laboratories and field stations occupy sites on the north and south banks of the Gambia River, has funded and hosted international scientists for the better part of a century. Experiments conducted with Gambian populations have yielded key insights about nutrition, agronomy, and infectious and vector-borne diseases, transforming the field of tropical medicine (Geissler et al. 2008; Malowany 2001). The majority of that work has focused on malaria. Clinical studies conducted in the Gambia on the effectiveness of bed nets, pharmaceuticals, vaccines, and residual sprays form the basis for many current global policies on prevention and treatment (e.Para-States and Medical Science, Edited by Paul Wenzel Geissler, 01/2015: chapter 10; Duke University Press.