Academic journal article Cultural Studies Review

Imagining 'Atlanta': The Politics and Poetics of Space and Marginality in Medical Research in East Africa

Academic journal article Cultural Studies Review

Imagining 'Atlanta': The Politics and Poetics of Space and Marginality in Medical Research in East Africa

Article excerpt

Staffmembers working on AIDS prevention clinical trials in East Africa meet weekly to discuss the status of the trials and give updates on their participants. They discuss the number of new volunteers enrolled, and whether or not the weekly goals have been met; they report how many volunteers missed follow-up appointments and the number of new pregnancies, and how many volunteers seroconverted and how many withdrew from the study. These meetings usually begin with a prayer and conclude with 'AOBs'-or, 'any other business'. The chair queries each individual staffmember-Apollo? Helena? Bryan?-and in response most silently shake their heads but every once in a while a team member will raise an issue that was not covered in the formal agenda. I was attending such a meeting in Kisumu, Kenya, in 2007 when one of the team members abruptly stopped the flow of the AOBs when she inquired about the possibility of buying a baby coffin for an infant enrolled in the study who had died.1

Although the child had not died as a result of the study or study procedures, a study involving parent and child, the mother had requested financial assistance from the researchers to cover costs she could not. The study coordinator, a local Kenyan clinician, was quick to reply. She firmly stated that the study did not cover such costs, adding that the study was responsible only for medical costs incurred while the child was alive. Upon death, the child was no longer officially enrolled in the study and thus the trial no longer had any financial obligations to the mother or family. A number of the staffmembers grumbled and shook their heads in disapproval, seemingly dissatisfied with the result, but the discussion was closed and AOBs continued on with the remainder of the staff. On this particular day, the principle investigator (PI) of the clinical trial, an American epidemiologist, was absent.

A few weeks later he and I were talking about his study and I recounted the story to him. In reply, or perhaps in defence, he told me another story. He was leaving work at the end of the day, driving out of the parking lot at the clinical research centre, when he noticed a woman enrolled in the trial walking home. Many trial participants travel from rural areas to participate in clinical trials in town, walking long distances and taking dangerous matatu rides to get to the city. Although participants are given a 'transport' reimbursement as part of the informed consent process, they often save it for food or other urgent expenses and instead elect to walk.2 The woman was carrying her deceased baby-the infant had died that day at Russia, the provincial hospital where research participants access medical treatment as defined by the trial protocol-and she was on her way home where, following Luo custom, the child would be buried in the family plot. The American stopped and offered to drive the woman to her rural home. He recounted that it was a long journey, an hour and half to her home along those muddy rural roads, the woman sitting silently with her dead baby. He mentioned it to one of his American colleagues the following day and he was quickly reprimanded. It was not within institutional policy and they were strictly forbidden to carry deceased individuals in a car without the proper permits. But, he asked me, 'What was I supposed to do?' His response to me-invoking a story about personal compassion and individual action-was an attempt to counter my comments on the material inequities inherent in clinical trials and global medicine. But his story also spoke subtly to the complex ways that value, ethics and spatiality merge in transnational clinical trials.

In part this article explores a theory of space and takes sites of science as its object of study, as a way to analyse the negotiation of space, power and value in transnational science that involve the West and East Africa.3 I want to think here about the geopolitics of science-the, sometimes improbable, spaces of experimental medicine and the connections between those spaces. …

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