The Experiment Must Continue. Melissa Graboyes
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, there were frequent disagreements and occasional cases of spectacular conflict. Finally, since East Africans were active participants in these encounters, it follows that the ethical norms that came to characterize field ethics in East Africa were not just dependent on the desires of European researchers, or on the result of theoretical ethics being placed in a field-research environment. Rather, the dialogic period and the medical encounters, which necessitated the participation of both researcher and subject, led to the creation of a hybrid ethical form, which may be referred to as “everyday ethics” or “field ethics.”
Research Is Jambo Geni Sana (a Very Foreign Thing)
There was, and is, very little shared understanding of the key components of what medical research is, who does the research and why, and what constitutes the risks and benefits. As is explained in chapter 2, many East Africans continue to discuss medical research in terms of blood, and, more specifically, state that research consists of taking blood, and that the “risk” of research is losing blood from the body or having it circulate outside the body. There is also a widespread misunderstanding that the benefits of participating in research are the medicine (dawa) that is given out by researchers. Medical researchers are often labeled as a generic type of expert, and are on occasion likened to traditional healers who have the potential to both harm and heal. The reasons why research is done are particularly hazy, with many people claiming the goal is to discover disease and treat individuals. Therapeutic misconception—the belief that research is being done to benefit the individual—is rife, and creates serious questions about the quality of participants’ consent.
Anthropological work from Kenya indicates that these types of confusion exist into the modern period. In general, “the concept of research and of different studies remains difficult to get across.”29 A group of scientists and anthropologists working on the Kenyan Coast have admitted that despite lengthy and thorough explanations of their projects to residents, they consider “incomplete levels of understanding, or ‘half knowing,’” as almost inevitable.30 This group has gone so far as to question whether it’s a gulf that can be bridged, noting that “it may be very difficult, arguably impossible” to help some participants understand the nature, goals, and activities of specific medical research projects.31 These are some of the researchers most committed to trying innovative new strategies to ensure research is understood, which makes these findings particularly troubling, and even more important to acknowledge.
Research as a Transaction: Gifts and Commodities
One of the surprising areas of agreement both historically and in the present is how both subjects and researchers discuss medical research as a type of transaction or exchange. Colonial researchers enmeshed themselves in a series of economic exchanges that often started the moment they arrived in a field site and needed transportation, food, and lodging, and began to either pay generously or haggle while complaining about unfair prices. Researchers linked themselves to communities via favors, salaries, and what they offered residents to participate in the projects. Economies sprang up for items desired by researchers which would not otherwise have been traded openly: it became common to exchange blood for pills,