The Experiment Must Continue. Melissa Graboyes

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СКАЧАТЬ guaranteed to be therapeutic misconception.¹¹⁰ Therapeutic misconception is the name given to the erroneous belief that participation in medical research will benefit the subject personally.¹¹¹ Such misconception chips away at the informed and understanding components of modern consent practices, and calls into question the overall ethical nature of research. This is discussed in greater depth in chapter 4.¹¹²

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      By focusing on how East Africans talk about medical research, the language used, and the stories told, it becomes clear that there are real differences over basic questions like who a researcher is, what kind of work he does, whether he is helpful or harmful, and the role of blood within the research encounter. Stories like Mama Nzito’s account of dead school children and the narratives of blood-stealing Bwana Matende are typically discussed by medical workers as nothing more than rumor. Labeling these stories as rumor allows for the narratives to be dismissed as false and fantastical. Yet, a careful focus on the very words used to discuss research, and the language used historically, indicates a general sense that research involves prying and snooping and sometimes even spying. This understanding of research is in keeping with tendencies in other countries, but is also a product of East Africa’s medical history and researchers’ own explanations over the past half-century.¹¹³ It also means that stories of blood theft are given fertile conditions to grow.

      Throughout East Africa, and Africa more widely, rumors have circulated for decades about medical researchers who steal and sell African blood. Among historians and anthropologists, the stories have often been explained as representing vague fears about the postcolonial condition and global inequalities, a rise of the occult, or resistance against the colonial state.¹¹⁴ The stories are assumed to be untrue; as one scholar wrote, mumiani “of course do not exist.”¹¹⁵ Luise White, who has provided the first thorough accounting of blood-stealing stories in the region, maintains that the falseness of the stories is what makes them meaningful.¹¹⁶ As the anthropologists Fairhead and Leach point out, “rumour has become shorthand for an idea that can be dismissed; that needs to be replaced with proper ‘facts.’”¹¹⁷

      Most international medical and public health organizations would agree with White’s assessment that the stories are not true and with Fairhead and Leach’s assessment that rumors must be replaced with information. In the public health realm, the stories are signs of African inexperience with Western medicine and signal the continued presence of traditional beliefs. Public health workers want to minimize, ignore, manage, spin, or step around stories of blood theft—not engage with them. A report put out by the UNICEF office in Kenya addressing anti-vaccination rumors clearly stated that their goal was to persuade the critics to stop spreading stories.¹¹⁸ The working assumption of most biomedical practitioners—doctors, researchers, public health acolytes—seems to be that disagreement with their position is the result of ignorance. This has been referred to as the “public ignorance model,” where disagreements between scientific experts and the public are always assumed to be the result of “inadequate public understandings.”¹¹⁹ Assumptions about rural populations’ ignorance and the need to educate in order to encourage their participation in projects meant to benefit them are not limited to the public health realm. The same narrative also circulates in development circles. World Bank projects in Tanzania often draw upon government officials who “regard themselves as an educated elite, responsible for telling ‘peasants’ how to develop because they ‘don’t know anything,’ attitudes replicated throughout the civil service.”¹²⁰

      Current discussions of those who choose not to participate in medical research or other biomedical interventions sound suspiciously like discussions of “unenlightened” Africans from the colonial era. For many in the medical community, the assumption remains that rumors will “abate with ‘proper’ biomedically oriented scientific education.”¹²¹ From a biomedical perspective, there is no rational reason for people to be against modern public health or research interventions, be they vaccination campaigns, blood banks, or low-risk medical research projects. Thus, a crop of education campaigns have begun to enlighten Africans regarding all sorts of safe and appropriate biomedical procedures.

      A study of blood donation refusals in Nigeria declared, “Most of the reasons given were based on misconception, misinformation and ignorance” and concluded that “massive public health and literacy campaigns . . . to inform and educate the rural populace” were needed.¹²² Doctors at the Bugando Medical Center in Tanzania came to the same conclusion, recommending a blood donor recruitment campaign that would focus “on clearing wrong conceptions about blood donation through providing information on all aspects related to blood donation.”¹²³ This zealous approach of combatting ignorance with education isn’t confined to history or foreigners. A Tanzanian medical researcher declared that people living on the islands in Lake Victoria “just didn’t understand [medical research]—they didn’t have any education.”¹²⁴

      But is better or more education about biomedicine really the solution? Evidence presented in this chapter would indicate the answer is no. East Africans are opting out of medical research and public health interventions because they assess risks differently, or have an entirely different understanding of what constitutes the medical research encounter. These differences are significant—they highlight huge chasms that have profound implications for whether modern East Africans can be considered freely consenting volunteers in medical research projects, how risks and benefits are judged, and how therapeutic misconception has become a common part of the research experience.

      Many early medical workers presumed that, as people were exposed to biomedicine, traditional systems would be replaced. In 1937, the Kenya Annual Medical Report presumptuously announced that European medicine was “thoroughly established throughout the colony.”¹²⁵ Yet more recent research has shown that “education and extensive use of biomedical services appears in many cases to have had limited impact, if any at all, on the popularity of traditional medicine.”¹²⁶ Expecting East Africans to suddenly adopt a biomedical model wholesale—rather than continuing to create a syncretic system based on centuries of contact with foreign healing systems—is naive and contrary to basic historical and anthropological evidence.

      RESEARCHERS ARRIVE

       Historical Narrative

      “INSPEAKABLE ENTOMOLOGISTS”

       H. H. Goiny and a Failed Attempt to Eliminate Lymphatic Filariasis, Pate Island, Kenya, 1956

      On February 5, 1956, entomological field officer H. H. Goiny of the Kenya Medical Department arrived at Pate Island in the Lamu Archipelago.¹ He came with a clear mission: to do his small part to help eliminate the disease of lymphatic filariasis from the island. He also came with three African assistants to help him, and after a thirty-six-hour boat ride from the Lamu harbor, where he had dragged his own equipment through the mud and slime, they disembarked, exhausted. Since no one met them at the port they wrestled their supplies to shore and set up tents. The following day they would start their work: mapping mosquito breeding sites, trapping mosquitoes indoors and out, and preparing for the future phases of the elimination attempt that would include spraying DDT inside homes, testing local residents’ blood to estimate the prevalence of the disease, and administering drugs to all islanders.

      Just because no one met Goiny at the port didn’t mean the islanders didn’t know of his arrival. In fact, as Goiny was setting up his tent a meeting was in progress with the mudir (one of the traditional leaders on the island). The meeting was about the villagers’ strong belief that Goiny was there as a government emissary intending to do them harm. When the meeting concluded, a group of local Arab men arrived at Goiny’s tent to pointedly ask who had given СКАЧАТЬ