'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

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

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

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

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

An exploration of social determinants of health amongst internally displaced persons in northern Uganda

Social determinants of health describe the conditions in which people are born, grow, live, work and age and their influence on health. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, which are themselves influenced by policy choices. Armed conflict and forced displacement are important influences on the social determinants of health. There is limited evidence on the social determinants of health of internally displaced persons (IDPs) who have been forced from their homes due to armed conflict but remain within the borders of their country. The aim of this study was to explore the social determinants of overall physical and mental health of IDPs, including the response strategies used by IDPs to support their health needs. Northern Uganda was chosen as a case-study, and 21 face-to-face semi-structured interviews with IDPs were conducted in fifteen IDP camps between November and December 2006

Field station as stage: Re-enacting scientific work and life in Amani, Tanzania

Located high in Tanzania’s Usambara Mountains, Amani Hill Station has been a site of progressive scientific endeavours for over a century, pushing the boundaries of botanical, zoological and medical knowledge, and providing expertise for imperial expansion, colonial welfare, national progress and international development efforts. The station’s heyday was from the 1950s to the 1970s, a period of global disease eradication campaigns and the ‘Africanization’ of science. Today, Amani lies in a state of suspended motion. Officially part of a national network of medical research stations, its buildings and vegetation are only minimally maintained, and although some staff report for duty, scientific work has ceased. Neither ruin nor time capsule, Amani has become a quiet site of remains and material traces. This article examines the methodological potentials of re-enactment – on-site performances of past research practices – to engage ethnographically with the distinct temporalities and affective registers of life at the station. The heuristic power of re-enactment resides in its anachronicity, the tensions it introduces between immediacy and theatricality, authenticity and artifice, fidelity and futility. We suggest that re-enacting early post-colonial science as events unfolding in the present disrupts straightforward narratives about the promises and shortfalls of scientific progress, raising provocative questions about the sentiments and stakes of research in ‘the tropics’.</jats:p