The Experiment Must Continue. Melissa Graboyes

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СКАЧАТЬ upon language that sounds strikingly modern in the framing of individual rights, autonomy, and respect. As just one example, in 1907, a doctor in the Belgian Congo inquired as to whether Africans infected with sleeping sickness could be forcibly treated with the drug atoxyl, which contained high levels of arsenic and often led to blindness. The response stated that the use of such a medication “would be inhumane and its administration to unwilling victims would be contrary to elementary principles of ‘natural law.’” If blindness was a possible result, “it could be used only with the consent of the victim, who would have to be forewarned of its danger.”¹⁸ The response takes account of many of the issues modern medical ethics would ask about such a high-risk treatment: accurate information must be shared about the potential dangers, and informed consent must be gained. Individual researchers could show a great degree of sensitivity toward the ethical dilemmas they faced while trying to carry out their work.

      These cases of sensitivity are not as rare as one might think. Mixed in the archival record are bits and pieces of surprising, even jarring information regarding African subjects and European researchers not behaving as expected, unlikely alliances being created, power relations being inverted, practices being contested, and new norms and everyday ethics being created and remade in a sometimes collaborative, sometimes conflict-ridden process of give and take. Why did African chiefs use coercive methods to enroll their subjects in colonial medical research schemes? Why did some colonial researchers risk their careers to make arguments to their superiors about minimizing risk and increasing benefit to African participants? Who would guess that European medical doctors in the repressive Belgian Congo would engage in a thoughtful ethical analysis of whether a dangerous therapy could be forcibly given to Africans? How did patients at the Itesio Leprosarium in Kenya make a very modern-sounding appeal for better, more effective treatment, writing, “we are also has the rights . . . the right of human being are only one as the others [sic]”—invoking the now ubiquitous language of human rights?¹⁹ Why did a European researcher try to criminalize the dissent of an African community nearly fifteen years after the creation of the Nuremberg Code? How was it possible that East Africans exerted so much control in these medical encounters, especially given the very real power inequities between colonial researchers and subject? From the earliest accounts, researchers were often alarmed by how the behaviors of supposedly passive subjects forced them to modify or cancel projects. There can be no doubt that East African “subjects” are a big part of this history of medical research, and not merely as pathological museums to be observed, or as the human bodies where exotic diseases are to be found.

       Arguments

      This book provides detailed, localized information about how medical research actually took place: how researchers behaved when arriving in communities, recruiting participants, managing risk and offering benefits, and, ultimately, concluding their experiments and leaving. It also asks how East African communities and participants made sense of these encounters. It lends historical depth to modern questions of medical ethics and brings to light a host of ethical questions that continue to resonate today. Questions such as what makes a subject a “volunteer,” what types of conditions are “coercive,” how much individuals and communities must know about the short- and long-term risks of experimental interventions to be truly informed and consenting, the types of benefits that are meaningful and appropriate, obligations when ending research projects, and questions of overuse of populations. The significance of these questions might be better appreciated by first clarifying what medical research is, and then understanding its scale in East Africa.

      Medical research is a sustained inquiry into a particular health-related question that is answered with the systematic collection of data or through experimentation, and where the goal is to create new, generalizable knowledge.²⁰ In addition to this standard definition, the present study also considers projects that were often labeled as “schemes” or “interventions” to improve public health, but where bodily samples such as blood, urine, stool, skin, or spinal fluid were taken with a primary goal of gathering data. I also consider activities that were labeled as public health interventions when the methods used were experimental or actually changed the disease environment in unpredictable ways. My last departure from standard definitions of research is that I adopt a different vocabulary, referring to East Africans as “participants,” since they were rarely passive recipients of medical interventions; they were not “subjects” (the commonly used term) but active contributors in the medical encounter.

      In terms of scale, medical research was a major part of many East Africans’ initial exposure to biomedicine. By my conservative estimate, in the fifteen years between 1945 and 1960, more than 200,000 East Africans participated in some form of medical research—which generally meant submitting to a bodily examination and/or giving a sample of blood, urine, or stool.²¹ That number represents a bare minimum. In 1950 alone, more than 100,000 people in the southern province of Tanganyika and the West Nile District of Uganda were examined for diseases such as leprosy and sleeping sickness.²² These exams often involved undressing and being palpated. Even if one disagrees with the idea of calling this research, these kinds of large-scale activities clearly extended the touch of biomedicine.

      If we focus only on research that required bodily samples, the numbers are still significant and justify the estimate of 200,000 people involved. The EAMS collected blood specimens from 25,000 people in 1951–52.²³ The Filariasis Research Unit collected 50,000 blood slides from across the region in 1954–55.²⁴ For another sense of scale, we could focus on the work of a single agency during a single decade. During the 1940s, the Tanganyikan Medical Department collected blood and urine samples from 3,000 schoolboys and army recruits while testing for hookworm and bilharzia. More than 3,800 people underwent blood testing for research related to sexually transmitted diseases. Over 7,000 blood slides and nearly 1,000 stool samples were collected while investigating sleeping sickness and hookworm. In all, blood samples were collected from more than 30,000 people. Even this partial account puts the number of Tanganyikans who gave blood, urine, or stool samples to this single agency in less than a decade past 43,000.²⁵

      The size of these projects, and researchers’ tendencies to want to work in the same place over a period of time, meant that some populations moved from having been in very superficial contact with biomedicine to being heavily used in just a few years. Researchers involved in these large projects wrote of being “afraid of milking the same cow too often” and cautioned each other against conducting too many projects in the same place simultaneously.²⁶ In Kagunga, on the lakeshore just south of the Burundian border, 6,000 blood slides were taken in 1952; three months later, a thousand people were examined again. Three thousand more were examined in 1954, 1955, and 1956.²⁷ In 1950, in Kibondo District in western Tanganyika, blood slides were taken from 9,000 people, more than 25 percent of the total population.²⁸

      The sheer number of people who participated is one indication of the importance of medical research, but the number also leads to more interesting questions: How did these thousands of encounters shape East Africans’ opinions of biomedicine and the colonial enterprise? How was, and is, research understood by those East Africans who were participants? And what does this book—which is a history, and begins to reconstruct an emic perspective of East Africans’ understanding of medical research—have to say to current debates related to human experimentation in the global south, cross-cultural medical ethics, and ongoing miscommunications between researchers and subjects?

      There are four main arguments running throughout the book. First, historically and in the present, East Africans perceived research very differently than researchers did—to the point that it is questionable whether people knew they were participating in research. Second, despite the fact that there was no shared sense of what constituted research or why it was done, researchers and participants both tended to talk about these encounters in a transactional way, as a form of exchange. The third theme is the conflict resulting from putting points one and two together: because there was not a shared sense of what research was, but both sides were judging the encounter as a type of exchange and had expectations about what was fair and appropriate, СКАЧАТЬ