The Experiment Must Continue. Melissa Graboyes

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The Experiment Must Continue - Melissa Graboyes Perspectives on Global Health

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government-affiliated medical researchers were burdened with the negative views many people associated with the larger government. Citizens’ impression of the government was explained using a play on words in Swahili. Serikali means “government,” but it sounds and looks remarkably similar to the phrase siri kali, which means a potent/dangerous secret. The very word to denote government implied to people that it was made up of dangerous secrets. The work of researchers was often referred to as just one of the many “secrets of the government” (siri ya serikali). The theft and sale of African blood by researchers was assumed to be part of these secrets. When I asked Mzee Thomas about whether the modern Tanzanian government was aware of the blood stealing, he responded, “This now, is a secret of the government [siri ya serikali].” When I asked whether this was “only the government of Tanzania, or all governments,” he laughed and explained, “All! Every government in the world, even yours.”56

      When it came to describing the government and its relation to residents, kali (fierce) was closely related to another word—nguvu (strength or authority). Typically, anyone who was kali also had nguvu to back them up, or it was the nguvu that allowed them to be kali. Nguvu bred fear, or at least suspicion, and references to nguvu typically involved feeling the negative weight of government.57 Because of the nguvu of the government, orders didn’t always have to be made explicit. The perceived close connections between researchers and the government often led to a sense that villagers felt compelled to participate in medical research projects. While no one claimed government control was so complete as for every act of defiance to be punished, interviewees did emphasize the strength of the government (nguvu ya serikali). One woman claimed that during the colonial period even babies sucking at the breast would stop to pay attention when the government spoke.58

      Another dimension to the public’s understanding of researchers comes through the use of the phrase amri sio ombi—“orders, not requests.” The district commissioner, the chief, and the researchers did not request people to participate in research trials, they ordered it. Communities’ responses to those amri (orders) varied from cheerful participation to outright refusal. Smallpox vaccination campaigns in the late 1960s elicited both types of reactions. When I asked one woman (a mother of thirteen, of whom seven had died) if anyone had refused to be vaccinated, she stared at me with disbelief and clearly stated, “In the face of illness, a mother can’t refuse.”59 Yet sometimes such willingness came in the wake of amri. One man was emphatic that no one had any doubts about getting the vaccine, since smallpox was so dangerous, but the government gave the amri just in case.60

      When I pressed interviewees about whether anyone could openly disagree with the government or chief’s orders, I was repeatedly told that no one would.61 Still, although they claimed no one could disagree, there was plenty of discussion of the tactics used to discipline dissenters. Those who would not follow amri would be grabbed and gathered together, forced to participate. Punishment included fines and confiscation of property such as cattle.62 Two men finally admitted there was one person who would disagree with orders: “a madman.”63 Because of the nguvu of the government, orders didn’t always have to be made explicit and only madmen would question them. While this was certainly a characteristic of East Africans’ relationship with the British colonial government, it was one that continued into the independence era. When I would ask for clarification about which “government” was being referenced, interviewees would shake off the question: serikali ni serikali—government is government—no matter who is in charge.

      One of the major areas of disagreement between medical researchers and East Africans was about whether the researchers were actually doing government work, and whether science ought to be considered in relation to everything else around it. The researchers may have acknowledged that they were technically employees of the state, but they maintained that their work was apolitical and ahistorical—not shaped by or a result of anything other than the practice of science and objective scientific data. The researchers maintained that key questions such as the form science took, which projects were funded, what were considered viable research questions, or where projects were sited were answered entirely on the basis of objective, unquestionable data. Science was not affected or shaped by the larger social and political world that affected everyone and everything else. As the previous discussion indicates, however, East Africans saw medical research as firmly entwined within and impossible to separate from larger government activities or motivations.64 In the 1990s, as Tanzania began to adopt the new malaria drug sulfadoxine/pyrimethamine, some people were very angry and reported that they “were part of an experiment staged by the Tanzanian government to see how the drug kills or how many people would be killed by using SP.”65

      While East Africans often sought to understand medical research by better understanding who medical researchers were—and often came to the conclusion that the researchers were government, if not government-affiliated—that was not the most common link people made. More than associations with government, with force, and with secrets, there was one substance most people thought of when they talked about research: blood.

       What Is Research?

      Most East Africans describe “research” in terms of blood. Mzee Mwendadi, who was a driver for Mwanza-based medical researchers in the 1970s and 1980s, explained research as “the taking and checking of blood.”66 People frequently spoke of how blood was “looked at,” “examined,” or “checked.” “Disease” or “bugs” were searched for or “discovered” in the blood, by unclear methods. This strong linking of medical research with blood is in keeping with findings from other parts of Africa. The West African nation of The Gambia has been a site for British medical research dating to the 1940s.67 There, when villagers were asked if they would prefer medical research without the blood taking, they responded, “But blood is necessary in all medical research!”68

      Most respondents agreed that research comprised multiple steps: first, take blood; then, discover disease; finally, distribute medicine.69 One woman explained, “When they finish taking blood, they search for disease and they cure you, and you go home.”70 These stages are in keeping with what has been reported in western Kenya. When secondary school students were asked to write a composition about “research,” they described how “first ‘blood is taken’; second ‘it is studied with the microscope’; finally ‘we are told who is ill and given medicine.’ (Some well-informed children added a fourth one: ‘you get a Ph.D.’)”71 Yet, are we sure that the damu that is mentioned by so many East Africans is really equivalent to the blood of biomedical accounts? Since damu is the substance most East Africans associate with medical research, it’s worth asking whether we really understand what it is, and how a definition of blood that’s broader than Western biomedicine might affect people’s views of medical research.

      Research Is Blood

      Modern Swahili/English, Swahili/French, and Swahili/Italian dictionaries define damu first and foremost as “blood,” but go on to mention menstruation, blood relationships (children), blood relatives, and the proverb “Blood is thicker than water.”72 In each of these areas, the definitions and connotations of blood do not stray too far from a biomedical understanding; meanwhile, in most American and European language communities, blood can be used as a reference point to family, in addition to being used idiomatically. Swahili dictionaries going back to the 1880s reflect roughly the same usages. It is clear that, as in most parts of the world, a reference to “blood” can refer to both the physical substance and to kin and regeneration. That blood is also linked with menstruation makes implicit reference to the fluid’s role in female fertility and an individual family’s regeneration.73 In some parts of East Africa, moreover, menstrual blood and its regular flow also signify the overall health of the society.74 However, Swahili dictionary definitions do not mention probably the most salient components of East African understandings of blood:

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