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

London School of Hygiene & Tropical Medicine, Keppel Street, London WC1E 7HT, UK.
Social Science & Medicine (Impact Factor: 2.89). 06/2008; 67(5):696-707. DOI: 10.1016/j.socscimed.2008.02.004
Source: PubMed


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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Available from: Ann Horton Kelly, Jul 24, 2014
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    • "Whilst their roles may vary, in charging volunteers with such central roles in framing community development, those coming from outside directing intervention practice often fail to acknowledge the complexities they introduce in the lives of community health volunteers. These volunteers are required to manage, negotiate and navigate a series of multiple and often conflicting socialities, relationalities (Geissler et al. 2008) and expectations driven by their interstitial position between insider/community member and outsider/representative of the intervention group. Representing (often conflicting) values, responsible for ongoing and informal information and education of their peers in support of the intervention aims, community volunteers are challenged to negotiate novel and externally-supported positions of power in their community, maintained only as long as they remain faithful to and driven by the needs of the research. "
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    ABSTRACT: The category of community health worker applied within the context of health intervention trials has been promoted as a cost-effective approach to meeting study objectives across large populations, relying on the promotion of the concept of ‘com-munity belonging’ to encourage altruistic volunteerism from community members to promote health. This community-based category of individuals is recruited to facilitate externally driven priorities defined by large research teams, outside of the target research environment. An externally defined intervention is then ‘brought to’ the community through locally recruited community volunteers who form a bridge between the researchers and participants. The specific role of these workers is context-driven and responsive to the needs of the intervention. This paper is based on the findings from an annual evaluation of community health worker performance employed as community counsellors to deliver semi-supervised HIV self-testing (HIVST) at community level of a large HIV/TB intervention trial conducted in urban Blantyre, Malawi. A performance evaluation was conducted to appraise individual service delivery and assess achievements in meeting pre-defined targets for uptake of HIVST with the aim of improving overall uptake of HIVST. Through an empirical ‘evaluation of the evaluation’ this paper critically reflects on the position of the community volunteer through the analytical lens of ‘failure’, exploring the tensions in communication and interpretation of intervention delivery between researchers and community volunteers and the differing perspectives on defining failure. It is concluded that community interventions should be developed in collaboration with the population and that information guiding success should be clearly defined.
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    • "Failure pertains to the functions of (bio)ethics, which has been analyzed by scholars (and edited volumes) as variable, singular and universal, context driven, and embedded in regulation, knowledge production, economic disparities, and political economy to name a few (Cooper and Waldby 2014; Fisher 2009; Geissler 2015; Geissler and Molyneux 2011; Kingori 2013; Petryna 2009; Molyneux and Geissler 2008; Rosengarten and Michael 2013; Sunder Rajan 2012; see also Cohen 1999 and Hamdy 2012). Failure might be inevitable (or not), given the inequalities found between wealthy overseas research institutions and their impoverished neighboring communities and research collaborators (Crane 2013; Farmer 2002; Fairhead, Leach, and Small 2006; Geissler et al. 2008; Gikonyo et al. 2008; Reynolds et al. 2012; Wendland 2008). 14 In analyzing the politics of PrEP in Malawi, we wish to draw upon many of these insights, especially Cooper and Waldby (2014); Fisher (2009); and Sunder Rajan (2009; 2012) who examine the politics of neoliberalism and imperialism when it comes to offshored and privatized research. "
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    • "When we visited the country programme for malaria – which also received Global Fund money – they demonstrated that they knew there were high levels of endemic malaria in the country, including among pregnant women and small children (Geissler, Kelly, Imoukhuede, & Pool, 2008). They also found an alarming prevalence of endemic anaemia, both findings that are important for strategies into MCH. "
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