Paper short abstract:

People living in a high density area in Lusaka often engage in transnational medical research projects as they do in development interventions. The paper examines aspects of this entanglement and discusses some social and political implications of it.

Paper long abstract:

In debates about how study subjects engage in medical research the common contextual entanglements between health care services and research procedures remains a contentious issue. The issue gains additional dimensions when transnational medical research increasingly enrols study subjects from less privileged settings where people have difficulties in accessing quality health services. This ethnographic paper will examine how people living in a high density area of Lusaka, Zambia, engage in and move between transnational medical research projects and other interventions by the state, NGOs and churches. The paper will focus on the way people, well aware of the particular purposes of medical research projects, entangle research projects with development projects, and how this entanglement opens new (temporary) spaces for learning something, for livelihoods, for volunteering, and for critical engagement as citizens of Zambia and the world. The paper will close with some reflections about social and political implications of this entanglement.

Paper short abstract:

This paper argues that those involved in international health research must address questions of inequalities and social justice openly and directly in community engagement activities, and attempt to engage materially, through a broader distribution of resources and by means of health advocacy.

Paper long abstract:

This paper discusses the understandings and practices of community engagement (CE) in vaccine trials conducted in resource-limited settings. It draws on ethnographic fieldwork conducted between 2008-2010 within the context of paediatric trials run by the Kenyan Medical Research Institute and the US Centers for Disease Control and Prevention (KEMRI/CDC) in Kenya.

My works suggests that CE is socially constructed, context-specific and that it arises out of a particular history and framing of relationships between researchers and the 'community'. It is characterised by underlying ideas and assumptions about the nature of the 'community', and distinct ideas about what 'engagement' with science and 'collaboration' in bio-medical research mean and involve. At KEMRI/CDC the 'local community' is viewed by staff as separate from the 'research community' and much emphasis is placed on information exchange to address differentials or deficiencies in experience and understanding on the community's part. CE is however more contradictory and complicated than a simple meeting or exchange between scientists, community intermediaries and lay people. Such meetings are characterized by power differentials, differential access to resources, and related expectations of material assistance. Neglecting such tensions is not helpful since it tends to relegate community concerns to being seen as less important than the transfer of knowledge. This is counterproductive since material engagements, whether in the form of care giving for vaccine trial participants or infrastructural developments at government health facilities are welcomed as an expression of solidarity, result in increased acceptance of research and closer collaboration between researchers and community members.

Paper short abstract:

This paper examines the challenges, processes and frameworks within which biomedical research and scientific research institutions are constituted in the 'neoliberal' era in Africa from the vantage point of African scientists.

Paper long abstract:

This paper examines the challenges, processes and frameworks within which biomedical research and scientific research institutions are constituted in the 'neoliberal' era in Africa from the vantage point of African scientists. It is based on ethnographic fieldwork in an HIV research laboratory of a major African state university, with additional data from in-depth interviews with scientists working in related research institutions. Many successful research projects and research institutes in Africa are currently organised within the framework of 'collaboration' or 'partnerships' between African institutions and their counterparts from the 'North'. This framework signals a shift away from the legacy of unequal colonial power relations under which earlier medical research in Africa had been conducted, and seeks to address the resulting ethical challenges for post-colonial medical research. However, collaborations bring together scientists, institutions and populations with wide disparities in economic standing and power, education and experience, and levels of health and health care provision. Moreover they continue to be sustained through the injection of funds, expertise and forms of technological organisation from the North. Amidst these persisting inequalities, this emphasis on equality and independence implied by the idiom of partnership and collaboration can and does effectively hinder the articulation and engagement with the conflicts of interest that may arise from inequality. To 'collaborate', African scientists and their institutions engage instead a variety of less explicit strategies and practices to constitute experience and perceive their engagement in transnational science, which are discussed in this paper.

Paper short abstract:

Millions of Africans have been targeted for mass drug administration (MDA) to control parasitic infections. This paper explores ways in which the purported beneficiaries respond to what has been occurring.

Paper long abstract:

Ethnographic research on mass drug administration (MDA) for parasitic infections reveals ways in which the delivery of these huge and highly vertical programmes are perceived by many of those involved as a moral good. To some extent this is a strategy to secure funding and avoid critical scrutiny, but it also leads to a curious disengagement from attitudes and experiences of drug recipients. Millions of Africans have been targeted, with the apparent aim of 'making poverty history'. This paper explores ways in which the purported beneficiaries respond to what has been occurring. It reflects on why they may actively resist treatment or, more often, quietly fail to swallow the tablets. At the same time they too tend to make assertions about the developmental, social and personal benefits of MDA. Indeed, local leaders can be eloquent on the topic, while still not actually taking the medications themselves. Even parents who are strongly opposed to their children being treated in schools by their teachers are likely to share the rhetoric. A consequence is that superficial local-level investigation into the efficacy of programmes produces positive quotes from recipients, reinforcing the evangelical assumptions of bio-medics passionately promoting them at an international level. There is also a strange and sometimes bizarre setting aside of evidence, making it hard to assess whether or not these horrible and potentially debilitating afflictions are in fact being controlled, let alone being eliminated.

Paper short abstract:

This paper presents ethnographic research on living donation in Spain, the "world leader in transplantation". Although substantial amounts of money are invested in the improvement of renal replacement therapy and immunosuppression, research on the health of living donors is inexistent.

Paper long abstract:

Chronic kidney disease is a generic term that refers to the progressive loss of renal function. In its end stage, renal replacement therapy is required in order to avoid the patient´s death. Currently a kidney transplant is considered the "best choice". Extensive amounts are spent on improving replacement techniques and immunosuppression. Very little is spent on health investigations, safety and the needs of living donors.

In Spain, cadaveric donation has been the hegemonic practice for decades. Only ten years ago living donations were almost inexistent. Due to its important transplantation activity and high cadaveric donation rates, the Spanish Model of Coordination and Transplantation is currently considered the most successful worldwide. Nevertheless, social changes have led to a growing shortage of organs available for transplantation threatening the dominant construction of the success of the Model. Therefore, living donation has been widely promoted as nearly risk-free for the donor and ideal for the recipient. No qualitative studies have been conducted; social scientists are not at all welcome to investigate in the matter. Living donation is addressed using same logic as cadaveric donation: solidarity and altruism. This ideology is interiorized by the social actors. Although a few (biomedical) long-term studies indicate that donors frequently suffer from health consequences, information on mid and long-term physical and psychosocial risks is not given. Arguing on the basis of individual autonomy, Spain, the "undisputed world leader" leaves its living donors to their fate.