'Transport to Where?': Reflections on the problem of value and time à propos an awkward practice in medical research.

Based upon Kenyan ethnography, this article examines the gap between the bioethics aversion to value transfers in clinical trials, and research participants' and researchers' expectations of these. This article focuses upon so-called 'transport reimbursement' (TR): monetary payments to participants that are framed as mere refund of transport expenses, but which are of considerable value to recipients. The interest in this case lies not so much in the unsurprising gap between regulatory norms and poor study subjects' lives, but in the way in which this discrepancy between bioethical discourse and materialities of survival is silenced. In spite of the general awareness that TR indeed is about the material value of research, about value calculation, and expectations of return, it is not publicly discussed as such - unless ironically, in jest, or in private. This double-blindness around 'reimbursement' has provoked discussions among ethicists and anthropologists, some of which propose that the work that generates scientific value should be recognised as labour and participants, accordingly, paid. Here, this paper argues that such a re-vision of trial participation as work rather than as a gift for the public good, risks abrogating the possibility of 'the public' that is not only a precondition of public medical science, but also its potential product. The supposedly radical solution of tearing away the veils of misrecognition that 'free' gifting ideology lays upon the realities of free labour, though analytically plausible, fails to recognise the utopian openings within clinical trial transactions that point beyond the present - towards larger forms of social association, and towards future alignments of scientific possibilities and human lives

Chapter 12 Parasite Lost: Remembering Modern Times with Kenyan Government Medical Scientists

Medical research has been central to biomedicine in Africa for over a century, and Africa, along with other tropical areas, has been crucial to the development of medical science. At present, study populations in Africa participate in an increasing number of medical research projects and clinical trials, run by both public institutions and private companies. Global debates about the politics and ethics of this research are growing and local concerns are prompting calls for social studies of the “trial communities” produced by this scientific work. Drawing on rich, ethnographic and historiographic ­­­material, this volume represents the emergent field of anthropological inquiry that links Africanist ethnography to recent concerns with science, the state, and the culture of late capitalism in Africa

Global Health Research in an Unequal World

This book is a collection of fictionalised case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of global, political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines, and their implementation 'on the ground'. The case studies, therefore, focus on 'relational' ethics: ethical actions and ideas that emerge through relations with others, rather than in regulations

INTRODUCTION: SUSTAINING THE LIFE OF THE POLIS.

How are publics of protection and care defined in African cities today? The effects of globalization and neo-liberal policies on urban space are well documented. From London to São Paulo, denationalization, privatization, offshoring and cuts in state expenditure are creating enclaves and exclusions, resulting in fragmented, stratified social geographies (see Caldeira 2000; Ong 2006; Harvey 2006; Murray 2011). 'Networked archipelagoes', islands connected by transnational circulations of capital, displace other spatial relations and imaginaries. Spaces of encompassment, especially, such as 'the nation' or simply 'society' as defined by inclusion within a whole, lose practical value and intellectual purchase as referents of citizenship (Gupta and Ferguson 2002; Ferguson 2005). In African cities, where humanitarian, experimental or market logics dominate the distribution of sanitation and healthcare, this fragmentation is particularly stark (see, for example, Redfield 2006, 2012; Fassin 2007; Bredeloup et al. 2008; Nguyen 2012). Privilege and crisis interrupt older contiguities, delineating spaces and times of exception. The 'public' of health is defined by survival or consumption, obscuring the human as bearer of civic rights and responsibilities, as inhabitants of 'objective' material worlds 'common to all of us' (Arendt 1958: 52). Is it possible, under these conditions, to enact and imagine public health as a project of citizens, animated in civic space

Global health research in an unequal world: ethics case studies from Africa

This book is a collection of fictionalised case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of global, political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines, and their implementation 'on the ground'. The case studies, therefore, focus on 'relational' ethics: ethical actions and ideas that emerge through relations with others, rather than in regulations

Evolving friendships and shifting ethical dilemmas: fieldworkers' experiences in a short term community based study in Kenya

Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes

Seeking exposure: conversions of scientific knowledge in an African city

Transnational medical research has become a common feature in many parts of Africa. This paper explores the contribution such activity makes to the social and economic lives of those involved, including both trial subjects and local staff. By considering the value of the 'exposure' that involvement brings to staff and research participants, we reflect on the conversion of scientific knowledge into practical knowledge and its value to sustaining precarious livelihoods in an economically fragile city. We consider the interplay between science and sociality and argue for a need to take seriously the circulation of scientific knowledge beyond the confines of expert spaces