Paul Wenzel Geissler

Editorial: Popular concerns about medical research projects in sub-Saharan Africa - a critical voice in debates about medical research ethics.

Popular concerns about blood-stealing, trade in body parts, surreptitious birth control and the deliberate spreading of disease are common across sub-Saharan Africa, and there are indications that they are becoming more common in pace with the process of deprivation that economic and political destructuring has, over the last quarter century, set in motion across most of the continent (Comaroff & Comaroff 2000). Such stories are commonly referred to as ‘rumours’ – by those who observe and dismiss them, but also by those who, usually with due scepticism, pass them on to others. With its connotation of hearsay and gossip, the term is often used in contrast to ‘truth’, much like the equally problematic distinction of ‘belief’ and ‘knowledge’. It is our aim in this paper to move beyond the dismissal of these stories as ‘mere’ rumour, based on erroneous belief or traditional superstition, and to appreciate them as modern commentaries on social relations that involve, and extend far beyond, scientific medical research. If we nevertheless use the words ‘rumour’, ‘story’ and ‘concern’ synonymously, we follow the historian Luise White’s understanding that rumours, such as vampire stories in 20th-century Africa, ‘are neither true nor false, in the sense that they do not have to be proven beyond their being talked about; but as they are told, they contain different empirical elements that carry different weights: stories are told with truths, commentaries, and statements of ignorance’ (White 2000). By telling these stories, relating them to empirical facts in a given locality and at a particular moment, and intertwining them with other seemingly unrelated tales, people make new connections and reveal hitherto unseen links, weaving wide, often global connections into local patterns of relatedness (Geissler 2005). When, below, we speak of ‘rumour’ we are not expressing our scepticism; rather, we are reflecting the scepticism of those who tell these stories: their ambiguity towards formations of knowledge and power that reach deep into their everyday lives, and which are set in a world order that provokes their doubts. Medical research and the ‘trial communities’ it constitutes by linking scientists and subjects, institutions and funders, media and publics, is one of the networks of global connections that has been particularly prolific in the generation of rumours (P.W. Geissler and C. Molyneux, in press). The sort of rumours mentioned above, particularly those about blood, are often directly related to medical research and health interventions. During 15 years of involvement in medical research in Africa we have repeatedly encountered such rumours. From friends and colleagues we have heard many more reports of such rumours, sometimes impeding recruitment to research, affecting adherence to interventions and even threatening the continuation of whole research projects while more commonly providing a background noise without direct impact (Geissler 2005; Molyneux et al. 2005a; Pool & Geissler 2005; Fairhead et al. 2006; for a rare note in a medical paper, see Nchito et al. 2003; for the potential detrimental impact of public debates see most recently Singh & Mills 2005). Most of these rumours follow a relatively limited number of themes, while also showing regional and locally specific variation. On a more general level they merge into related genres such as urban legends and oral traditions (Burke 1998; Ellis & Ter Haar 2001), Tropical Medicine and International Health doi:10.1111/j.1365-3156.2006.01682.x

Discussing matters of sexual health with children : what issues relating to disclosure of parental HIV status reveal

Abstract Little is published about the disclosure of parents’ own HIV status to their children in Africa. Research shows that keeping family secrets from children, including those related to a parents HIV status, can be detrimental to their psychological well-being and to the structure of the family. Further, children with HIV-positive parents have been shown to be more vulnerable to poorer reproductive health outcomes. This qualitative study in Botswana conducted in-depth interviews among 21 HIV-positive parents on antiretroviral therapy. The data revealed that parents found discussing the issue of HIV with children difficult, including disclosing their own HIV status to them. Reasons for disclosing included: children being HIV positive, the rest of the family knowing, or the parent becoming very sick. Reasons for not disclosing included: believing the child to be too young, not knowing how to address the issue of HIV, that it would be “too painful” for the child/ren. Concern that other people might find out about their status or fear of children experiencing stigmatising behaviour. Interviews elucidated the difficulty that parents have in discussing their own HIV status and more general sexual health issues with their children. Parents and other guardians require support in managing age-appropriate disclosure to their children. This may further enable access to forums that can help children cope with their fears about the future and develop life skills in preparation for dealing with relationships of a sexual nature and sexual health as children move into adulthood. In developing such support mechanisms, changing family roles in Botswana need to be taken into consideration and the role of other family members in the upbringing of children in Tswana society need to be recognised and utilised.

'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.

Ethical challenges that arise at the community interface of health research: village reporters' experiences in Western Kenya.

Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations.

In/dependent Collaborations: Perceptions and Experiences of African Scientists in Transnational HIV Research

This article examines collaboration in transnational medical research from the viewpoint of African scientists working in partnerships with northern counterparts. It draws on ethnographic fieldwork in an HIV laboratory of an East African state university, with additional data from interviews with scientists working in related research institutions. Collaboration is today the preferred framework for the mechanisms by which northern institutions support research in the south. The concept signals a shift away from the legacy of unequal (post‐) colonial power relations, although, amid persisting inequalities, the rhetorical emphasis on equality might actually hinder critical engagement with conflicts of interest and injustice. To collaborate, African scientists engage various strategies: They establish a qualified but flexible, non‐permanent workforce, diversify collaborators and research areas, source complementary funding to assemble infrastructures, and maintain prospective research populations to attract transnational clinical trials. Through this labor of collaboration, they sustain their institutions under prevailing conditions of scarcity.

INTRODUCTION: The value of transnational medical research

What is the value of medical research? The question initially provokes an ethical response: the worth of a clinical trial is generally understood in terms of the impact of its outcomes on patient populations. The evaluation of human subjects research raises normative questions of values the future well-being of society in relation to the risk experimental procedures entail for participants. However, biomedical facts also circulate within national systems of healthcare, global policy organizations, property regimes and pharmaceutical markets. The current dominance of public-private partnerships under the rubric of ‘global health’, the uptake of pro-market strategies by governmental and philanthropic organizations, the bankrolling of the WHO by private individuals, suggest the extent to which the value of both therapeutic products and public health practices have been appropriated by a logic of profit. Clinical trials engage with and generate multiple orders of value; they straddle the world of commodities and public goods, of fiscal costs and moral virtues (Stark 2009). The papers in this special issue probe the different systems of value that exist between scientific ends, public goods, and lucrative commodities. Taking inspiration from recent ethnographic studies of finance in practice (e.g. Roitman 2005) and economic sociology (e.g. Çalışkan & Callon 2009), they explore how value is variously worked through material, socio-technical relations, institutions, and research practice. To discern the value of research ethnographically, a common starting point of these papers is the work of medical research, including volunteered participation, contracted employment, scientific analysis or ethical oversight. In drawing attention to the modalities of intellectual, practical, and affective labour that drive a clinical trial, this special issue situates the production of medical knowledge with respect to other forms of productive activity. In so doing, we seek to nuance perspectives on the significance of clinical research to the welfare of societies. What follows is a selective overview of social scientific research that explores the linkages between clinical trials, pharmaceutical markets and global health inequities. We suggest that this scholarship can be roughly characterized by two distinct critical aims. The first concerns the political economy of medical research and the structural conditions under which health becomes a resource for wealth. The value of medical research is analysed through an investigation of medical markets as networks of knowledge production, therapeutic consumption, and capital accumulation. The second interrogates the ethical significance of transnational clinical experimentation. In these studies, value is elaborated as a negotiation between the interests of communities, the protocols of science, the priorities of global health; it indicates access to life saving therapies, theWhat is the value of medical research? The question initially provokes an ethical response: the worth of a clinical trial is generally understood in terms of the impact of its outcomes on patient populations. The evaluation of human subjects research raises normative questions of values – the future well-being of society in relation to the risk experimental procedures entail for participants. However, biomedical facts also circulate within national systems of healthcare, global policy organizations, property regimes and pharmaceutical markets. The current dominance of public-private partnerships under the rubric of ‘global health’, the uptake of pro-market strategies by governmental and philanthropic organizations, the bankrolling of the WHO by private individuals, suggest the extent to which the value of both therapeutic products and public health practices have been appropriated by a logic of profit. Clinical trials engage with and generate multiple orders of value; they straddle the world of commodities and public goods, of fiscal costs and moral virtues (Stark 2009). The papers in this special issue probe the different systems of value that exist between scientific ends, public goods, and lucrative commodities. Taking inspiration from recent ethnographic studies of finance in practice (e.g. Roitman 2005) and economic sociology (e.g. Caliskan & Callon 2009), they explore how value is variously worked through material, socio-technical relations, institutions, and research practice. To discern the value of research ethnographically, a common starting point of these papers is the work of medical research, including volunteered participation, contracted employment, scientific analysis or ethical oversight. In drawing attention to the modalities of intellectual, practical, and affective labour that drive a clinical trial, this special issue situates the production of medical knowledge with respect to other forms of productive activity. In so doing, we seek to nuance perspectives on the significance of clinical research to the welfare of societies. What follows is a selective overview of social scientific research that explores the linkages between clinical trials, pharmaceutical markets and global health inequities. We suggest that this scholarship can be roughly characterized by two distinct critical aims. The first concerns the political economy of medical research and the structural conditions under which health becomes a resource for wealth. The value of medical research is analysed through an investigation of medical markets as networks of knowledge production, therapeutic consumption, and capital accumulation. The second interrogates the ethical significance of transnational clinical experimentation. In these studies, value is elaborated as a negotiation between the interests of communities, the protocols of science, the priorities of global health; it indicates access to life saving therapies, the equitable distribution of research benefits, and the means and terms of engagement afforded by a research project. Though articulated in different registers, we suggest that both these approaches to value demarcate the ‘social’ from the ‘economic’ dimensions of clinical research. Studies that explore the sociological consequences of the commercialization of medical research and those that seek to strengthen the moral traction of experimental procedures both analyse value as a structuring and systematic logic. We take an alternative track. Concerned with how the material practices of medical research intersect with everyday ways of living, we propose a more promiscuous approach to the question of value, one that is acutely aware of the diverse valuable materials and manifold processes of valuation attendant to medical experimentation. The purpose of drawing upon categories of value theory, such as ‘labour’, ‘production’, and ‘circulation’, is to open up these variables to ethnographic scrutiny (Graeber 2001). Rather than warn against economic incursions into medical knowledge and health practice, or, alternatively, the reduction of local experience to the standards of bioethics, we hope to illuminate the array of practices, knowledges, and techniques through which the value of medical research is brought into being.

'Life Seen': Touch and Vision in the Making of Sex in Western Kenya

Abstract This article is part of a project about transformations of relatedness among the Luo of western Kenya, which we examine by observing, in the everyday life of one village, concrete practices that constitute and negotiate material contact. In short, villagers understand physical touch and associated forms of material contact as practices that momentarily merge persons or their bodies by sharing substance. Such moments of merging release creative or transformative force, with its attendant ambiguity. To understand this link between merging and emergence, the Dholuo term riwo, is helpful. It can designate moments of ‘coming together, mixing, merging’ across all spheres of everyday life. Riwo is central to concerns with how things should be done, in everyday and in ritual situations, in order to sustain the order of life, commonly referred to as chike, which directs the ‘growth’ (dongruok) of the living. Since there is, in these times of death and confusion, little agreement among the villagers about how the continuity of life can be maintained, and which order should be created or restored, moments of physical contact (or its absence) are nodes around which the present predicament is debated, and alternative visions of past and future are produced. The present paper looks at one aspect of these debates: bodily intercourse between woman and man. We discuss how this practice, which among Luo tends to be associated with darkness and the absence of words, is increasingly drawn into the light of discourses – such as Christian, Traditionalist, medical and pornographic – which have emerged in western Kenya at different times during the past century, and which in different ways constitute ‘sex’ as a distinctive imagination of intercourse.

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?

'Go back to the land!': negotiating space, framing governmentality in Lambwe Valley, Kenya 1954-75

Abstract In 1954, the Lambwe Land Trust sought to address colonial concern to contain and control tsetse fly and thus the transmission of human trypanosomiasis (sleeping sickness) in Lambwe Valley, Western Kenya. The Valley needed less tsetse, more people; less bush and more farmed land. Reflecting the confidence of the 1950s to control land, nature, and people, the Lambwe Valley Settlement Scheme (LVSS) was established. While other schemes in Kenya grew out of a tense period of land disputes or mega-economic development, this scheme was much more modest, ensuring that good science and good government would defeat the fly. This article elaborates on both. The first narrative examines the scientific background on trypanosomiasis and tsetse control in this region. The second focuses on the people: African settlers, colonial and African bureaucrats, representing district, provincial, and national governments, engaged in day-to-day planning. Arguments and debates ensued regarding land rights and management, involving local African council and state representatives with their constituents within the context of the settlement scheme. The archival records demonstrated the evolution of a civil society in this remote section of Western Kenya, in spite of an increasingly dominating Nairobi-based government. The records exposed local voices and local visions as ordinary people negotiated their lives in the shadow of big science, big government, and big politics.

Scenes of Amani, Tanzania: Biography of a postcolonial landscape

Abstract In this paper an architect, two social anthropologists, and an architecture historian assess the postcolonial landscape of Amani Hill research station, a once highly productive and century-old site of scientific research. Rather than an ‘objective’ description of the overall site, this is done through six ‘scenes’ composed of photographs, drawings, and short essays that each highlight particular aspects of the ‘biography’ of this landscape. The mapping is accompanied by two reflections. Starting from cultural geographer John Wylie’s observation that ‘landscape is tension’, we discuss some frictions embedded in the inquiry of such a mundane postcolonial landscape. Subsequently, we engage with the work of mapping as ethnographic experiment, examining the unanticipated effects that our architectural survey produced within the local community. Together, the three parts of the article underscore the inevitability of tactical engagement with the material elements that make up the postcolonial landscape, even in seemingly detached survey work.