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MEDICAL RESEARCH PAST AND PRESENT

The East African Medical Survey

As an introduction it is essential to emphasize the difficulties met with in the carrying out of adequate medical surveys in East Africa. Many of the tribes are primitive and intensely suspicious: there is fear of witchcraft and it is not unusual for a request from us for even a specimen of faeces to be met by a firm refusal on the grounds that this specimen of stool is required for the performing of magic rites aimed at bewitching the donor of the specimen. The taking of a specimen of blood is especially resented: in one survey this resentment was so active as to lead to an abandoning of the survey. Medical officers face on one side the criticism that too many refusals will give a biased and incomplete picture, while on the other side they may be criticized for stirring up trouble in the areas in which they work. Ideally it is essential to carry out repeated exams of the excreta and of the blood . . . from each of the 4,000 natives on whom medical exams have been carried out. Any attempt to enforce this impossible standard would quickly arouse such deep resentment among the people that there would be no alternative but to abandon work. The most that could be expected is one specimen each of stools, urines and bloods from a large proportion of the natives examined and even this calls for much diplomacy and knowledge of the African way of life. Much credit is due to the medical officers for their perseverance even in the face of personal danger, as has twice been the case.¹

Lieutenant Colonel William Laurie, the first director of the East African Medical Survey (EAMS), paints a fairly bleak—if accurate—picture of medical research in the region in the 1940s and 1950s. He characterizes it through the difficulties, fear, suspicions, refusals, and resentment that surrounded the work; even a simple request for a specimen of feces could be met by a “firm refusal.” Conflict and misunderstandings were commonplace and, from his perspective, there was little to celebrate other than his brave workers. Laurie’s honesty and frustration also indicate that, although this medical research happened in a colonial context and under unequal power conditions, Africans were no mere subjects of medical research. They were active participants in these encounters, forcing projects to change and adapt based on what they deemed acceptable. In doing so, Africans shaped the practical and ethical norms in the literal and figurative space of the “field.”

The post–World War II project was part of what has been called the “second colonial occupation” of Africa.² The survey was the brainchild of Professor MacSweeny at London University and Professor George Macdonald from the Ross Institute at the London School of Hygiene and Tropical Medicine. The EAMS commenced in 1949, and, as was true of so many of the research institutes and individual projects in the region, the goals of the EAMS were never entirely clear, although they grew narrower during the organization’s six years of work.³ In 1949, the EAMS was described as having two distinct phases: first, that of “mapping of disease,” and, second, an attempt at “selective elimination of disease.”⁴ By 1951, plans to eliminate disease had disappeared, and the organization shifted entirely to describing local conditions: to get “a complete picture of what actually is medically wrong with the African.”⁵

Six locations across Tanganyika and Kenya were selected for in-depth surveying of thousands of East Africans. In each place, a team of researchers would descend to collect samples of stool, urine, blood, and skin to test for diseases such as anemia, worms, river blindness, malaria, and bilharzia. The medical researcher Hope Trant, who worked for the EAMS, was being both cynical and accurate when she called herself a “collector of specimens.”⁶ The number of Africans involved in each place varied between 2,000 and 6,000, and the science to support the “right” number of samples was not at all clear. In addition to the residents who were medically examined, all women were required to give maternity histories, and thousands of other people participated in community-wide agricultural, veterinary, dietary, or tuberculosis surveys.⁷ In Tanganyika, research was conducted on Ukara Island in Lake Victoria, Bukoba along the shores of Lake Victoria, Kasulu and Kibondo districts in western Tanganyika, and Kwimba in Sukumaland. In Kenya, surveys were completed in the western region in Kisii and along the coast in Msambweni. There were hopes to conduct a survey in Uganda, but because of problems securing help from the Uganda Medical Department, no research was done there.⁸ While those in charge claimed the sites were “representative” of East Africa, it seems many places were selected with an eye toward practical matters such as ease of access, existing infrastructure, and the presence of helpful local leaders. Nothing indicates these locations were representative in any meaningful way, or that conclusions relevant to these places could be convincingly extrapolated to the wider region.

MAP 1.1. East African towns and main research stations. Map by Chris Becker.

When the EAMS began, it was lauded as something novel. An annual report boasted “that never before had such investigations been planned on so broad and adequate a base.” After five years of work, the fate of this never before attempted scientific inquiry was plain. The administrators of the project conceded, “experience has since shown that the base was neither broad nor adequate.”⁹ By 1955, seven years after officially starting work, the EAMS had failed to accomplish either of its two publicly stated goals. Researchers were not able to create a broad and adequate base of scientific data, nor had the massive collection of data led to scientifically informed conclusions that shaped policymaking in East Africa. Despite tens of thousands of samples analyzed, reams of medical forms filled out, thousands of hours of interviews, and work in six different locations, the survey could not say anything new about disease or health in East Africa. Or, as one critic put it, the information gathered by the survey “should be of the greatest practical value to the East African governments” and “could lead to the development of measures to solve East African health, social and economic problems.”¹⁰ But the truth was that the shoulds and the coulds had not been fully realized.

. . .

The EAMS was the first large-scale example of organized medical research across the region, but it was not the first or last case of human experimentation. Since Europeans arrived in East Africa in the mid-1800s, Africans have been exposed to Western medicine and biomedical research practices. East Africans were the human material necessary for research projects focused on malaria, trypanosomiasis (sleeping sickness), leprosy, onchocerciasis (river blindness), schistosomiasis (bilharzia), and lymphatic filariasis (elephantiasis)—just to name a few of the tropical diseases that captured colonial imaginations. This sometimes meant taking pills or being injected with experimental drugs, but more frequently it meant providing blood, urine, stool, or skin samples, or being examined, measured, poked, and probed. Sometimes research practices were as invasive as a lumbar puncture, and other times as seemingly innocuous as having the interior of your home sprayed with insecticide.

Africa has long served as a source of scientific knowledge—what Helen Tilley has referred to as a “living laboratory” and “natural laboratory,” echoing the sentiments of colonial-era researchers in fields as diverse as ecology, forestry, and tropical diseases.¹¹ The impression of Africa as source of data and fertile testing ground is accurate in many ways. Over the years, discoveries have been made in the East African region with global repercussions, such as those pertaining to Kaposi’s sarcoma and the nature of drug resistance with antiretroviral drugs.¹² A particular focus of medical research over the past century was malaria, and Kenya, Tanzania, and Uganda have been the home of multiple elimination attempts, indoor residual spraying experiments, and countless drug trials, including currently ongoing malaria vaccine trials. The postwar global attempt at malaria eradication also led to more unusual approaches, such as a 1961 experiment in the northern Tanganyikan town of Mto wa Mbu, where all of the town’s salt was treated with the malaria prophylaxis, chloroquine. The project was “extremely popular” locally, and effective at reducing malaria rates. When the World Health Organization (WHO) abruptly stopped funding it in 1966, local residents were dismayed, but raised money to purchase the chemically treated salt themselves. The project ultimately faltered in 1972, and malaria rates returned to pre-experiment levels.¹³

Not all attention was focused solely on diseases endemic to East Africa. Tuberculosis (TB) was of global importance throughout the colonial era, and East Africa was one of many sites of TB research. In 1952, the UK Medical Research Council (MRC) ran a project inside the infectious disease hospital in Mombasa, where Kenyans sick with TB were given either the established treatment or an experimental one. In a published article the researchers wrote that the sixty-six patients involved were “unaware that they were receiving different treatments.”¹⁴ The MRC continued its TB research into the 1960s, basing experiments at hospitals and blurring the lines between treatment and research. One Kikuyu man, infected with TB, who was treated at the Infectious Disease Hospital in Nairobi in 1961, wrote to the Director of Medical Services in Kenya to complain that the hospital nurse never specified “whether it was trial treatment or ordinary” that he was receiving. Having found out that he had been enrolled in an experiment, he asked “whether a patient is to be forced to accept a trial treatment or to be requested to do so?”¹⁵

What do we make of these examples? They show the broad range of activities that qualify as human experimentation, but they also hint at the diversity and complexity of ethical dilemmas that mark medical research. Ethics refers to a whole branch of philosophy that addresses notions of morality and right and wrong, and medical ethics may bear on any number of diverse topics, including abortion, euthanasia, the distribution of scarce resources, and human experimentation. Research ethics have been defined as being “about ways to ensure that vulnerable people are protected from exploitation and other forms of harm.”¹⁶ Another, slightly broader definition is “how research scientists ought to behave towards their research subjects. Ethical rules govern the proper, moral, and desirable conduct of an individual or a profession; they have prescriptive, explicative, protective, and creative functions.”¹⁷ Sometimes the ethical questions arising from these situations are obvious—as with the enrollment of a subject in a TB drug trial without his knowledge or consent. Other times, they are less clear—such as what happens when an international agency like the WHO decides to withdraw funding, or when community members believe an activity is done as a permanent public health intervention rather than as a short-term experiment.

There are many examples of researchers and participants engaging with these types of questions and coming to nuanced ethical stances, while drawing 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, 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, urine for car rides, stool samples for medical examinations.³² This web of debt and indebtedness helped tie a foreign researcher to a community and contribute to trust or distrust.

Even with a shared conceptualization of medical research as a transaction, there is still gray area in defining the type of transaction. An object moving from one person to another can fall anywhere within the extremes of giving voluntarily, with no expectation of anything in return, to forcibly taking something without payment. Some might frame this as a choice between Mauss’s gift or Marx’s commoditization.³³ On the one hand, medical research could be characterized as being dependent upon commoditization of pieces of the body such as blood, skin, urine, and stool.³⁴ These items were physically separated from an individual, had a value, and were exchanged between the person who “produced” the substance and the researcher who valued it. On the other hand, it’s doubtful that these exchanges were wholly about commoditization. The anthropologist Parker Shipton has argued persuasively that in Luo country in western Kenya, “there is no systemic ‘gift economy’ or ‘commodity economy’ but rather exchanges that weave in and out of these principles.”³⁵

Moral economy may perhaps be a more appropriate framework for considering these transactions. The anthropologist Ruth Prince describes how the term captures “the shared mores and values with which people evaluate their relations with others, from economic transactions to the obligations informing social hierarchies and patterns of accumulation, including relations between political elites, states, and citizens.”³⁶ It should come as no surprise that as blood and other valuable substances moved from a body to outside a body, there were often disagreements about what type of exchange was taking place, whether it was equitable, whether the person was to trusted.³⁷ These transactions allowed for judgments to be made about researchers, for trust to be established and relationships to be created—all out of a transfer of bodily products from one person to another. However, if the exchanges of medical research were sometimes considered gifts and other times considered commodities, it meant that there were countless opportunities for miscommunication. Modern findings about medical research in the West African nation of The Gambia found that scientists and communities often came to “radically different framings” of the exchanges they were participating in, which could lead medical researchers to believe “that what they take from subjects is a gift rather than part of a transaction, and thus act in ways that from the other side appear to be stealing.”³⁸ If a participant believes she is participating in an inequitable exchange and may have been the victim of theft, it is no surprise that conflict often results.

Research as a Space of Conflict

“Conflict,” broadly defined, runs through each of the chapters; nearly every case study has moments of tension or places where research is put in jeopardy. The reasons were not always clear, since many of the projects at first glance look benign. These moments of conflict illuminate two important points. The first is that disagreements between researchers and East African participants were frequent, but that the arrangement of power was unpredictable. The fact that there was conflict indicated that people were not the docile subjects some past accounts have implied, and power was rarely effectively exerted upon subjects for very long. More frequently, participants demonstrate an ability to resist effectively, or at least mitigate, the control of individual researchers or larger projects. (I am wary of labeling these cases of researcher and community conflict as “resistance” since the term is too often used as shorthand for resistance against the colonial state. I am far more comfortable explaining it in terms of the very real dissatisfaction and discontent bubbling up because of specific projects, particular researchers and discrete interactions.³⁹) The second point about conflict is less obvious, and often overlooked in the literature about colonial science. That is, that colonial researchers were frequently in conflict with each other and that their disagreements illustrate the diversity of opinions existing within a supposedly unified and homogenous organization. The information presented throughout the book on the divisions in colonial opinion forces us to develop a more nuanced perspective on how colonial science functioned in East Africa.

One of the limitations of my argument is that I cannot speak to divisions within a community, and whether the resistance researchers perceived as all-encompassing was actually so unified. In many of these case studies, if there were significant fissures in villagers’ opinions (breaking on the lines of gender, class, religion, ethnicity, age, etc.), the data I have do not reveal it. This does not mean such fissures did not exist, but the dissent in these communities was widespread enough to present what looked like a unified front to bewildered and frustrated researchers. If the divisions in public opinion had been big enough, it seems someone—the researchers, the chief, a sympathetic villager—would have tipped the medical workers off. Researchers had no qualms about trying to appeal to whatever sympathetic factions they could find, but the data rarely reveals such divisions. It is also worth noting that I do not formally address how gender shaped (and shapes) the medical research encounter in East Africa. This is not an inadvertent oversight, but a result of the data I was able to gather: a majority of the researchers and participants available to be interviewed were male. Among the women I did speak with and who emerged in the archival documents, I was not able to discern themes or arguments on the basis of gender that felt adequately evidenced. It is a topic that I hope to pursue in the future, especially given the rich materials provided by Dr. Hope Trant, who is discussed in chapter 5.

Research and the Production of Everyday Ethics

This book’s final argument is that what came to be the norms of medical research—the accepted practices, how work actually got done, and the myriad compromises and modifications that required—were the product of negotiations. Clearly stated, researchers and participants were both responsible for establishing the norms of day-to-day medical research practice. East Africans regularly surprised and frustrated researchers by being such active research participants, and their preferences and demands forced researchers to modify scientific plans. Africans absconded from projects that didn’t fulfill their needs, shut down projects that didn’t align with their interests, or modified them in ways that better accommodated their own expectations of fair benefit, acceptable risk, or norms of the body and healer-patient relationships. As one example, plans to take blood in the middle of the night to test for lymphatic filariasis were abandoned after people refused to participate. Instead, blood was taken in the early evening, even though this was a less accurate method for testing and led to biased and problematic results.

In recent years, the distinguished medical anthropologist Arthur Kleinman has called for a shift in medical ethics so that they are “the outcome of reciprocal, participatory engagement across different worlds of experience.”⁴⁰ I agree with the sentiment, but I disagree with one of the assumptions: that current medical ethics are not the result of participatory engagement. Many, if not all, of the case studies in this book show that East Africans have made their preferences known, shaped practices in the field, and worked to create new forms of medical ethics that accorded with their own wishes and expectations. The “everyday ethics” governing medical research interactions in East African communities are the result of what the anthropologist Wenzel Geissler terms an “ethics of collaboration.”⁴¹ While formal ethics as stipulated in various human rights documents are well intentioned, they tend to discount or ignore “what happens when one person responds to the other in open-ended, face-to-face relations that occur within the field.”⁴² In response to this shortcoming, anthropologists have introduced the terms “everyday ethics” and “field ethics” that focus on “the ethics guiding the everyday life of research.”⁴³ A few words of caution here: by arguing that African subjects were active in establishing norms, I am not claiming that these interactions were fair, just, or ethical. Research was often deceptive, coercive, and exploitative, and there were power differentials between government-sanctioned researchers and colonial subjects/East African citizens that we must remain attentive to. Although I do use the terms “everyday ethics” and “field ethics,” they are problematic precisely because they sound benign, and may allow us to be too complacent when discussing exchanges that were deeply unequal.

Book Scope and Organization

The temporal and geographic scope of this book is unusual in that historians do not typically analyze the present, and anthropologists and bioethicists rarely look systematically to the past. The seven-decade span beginning in 1940 allows us to take account of change over a broad swath of time, to construct both historical and modern analyses, and to locate much continuity. Although there were cases of medical research in the region prior to 1940, it grew significantly in the following decades; it was only post-1940 that there came an infusion of British colonial funds and the creation of a more coordinated regional bureaucracy. (Discussions of medical research earlier in the century, as well as of the changes occurring in 1940, are found in appendix B and a related journal article.)

It is also unusual for Africanist historians to take a regional approach—one that I feel is more than appropriate for this topic. Post–World War I, all of East Africa was administered by the British (Tanganyika and Uganda as protectorates and Kenya as a colony), which led to the creation of regional research institutes, shared medical experiments and personnel, and a set of ethical questions around human experimentation that were more similar than different. Ecologically, the countries share many disease environments, and conditions such as trypanosomiasis (sleeping sickness), malaria, schistosomiasis (bilharzia), onchocerciasis (river blindness), and lymphatic filariasis were all widespread, as were conditions such as dysentery, diarrheal diseases, leprosy, ulcers, and yaws.⁴⁴ The fact that diseases did not, and do not, respect national boundaries created an incentive for shared research projects; it also sometimes incentivized heavy-handed research practices that ignored the needs and norms of East African communities. There is also something deeply practical about studying this region as a region, as projects continue to be shared and shaped across national boundaries, and I maintain that despite East African diversity, these are places more similar than different. A regional approach may also make the modern relevance of my arguments and conclusions more readily apparently.

I feel obliged to point out that, despite taking a regional approach, I have benefited greatly from other scholars’ micro-histories and medical ethnographies focused on specific communities. Literature on the topics of health, healing, and disease in East Africa, such as by Steven Feierman, John Janzen, and Meghan Vaughan, and works covering other areas of sub-Saharan Africa, have influenced my thinking and framing of this book.⁴⁵ I’ve also been inspired by a very dynamic set of new medical ethnographies focused on eastern and southern Africa. Recent books by Johanna Crane, Stacey Langwick, Julie Livingston, and Claire Wendland, in addition to the bountiful writings of Susan Reynolds Whyte, have all shown how biomedicine is constantly engaged with, or perhaps entangled with, the African people and places in which it operates. These works have persuasively shown that African communities have clear ideas about what fair relationships should look like, carefully choose which biomedical ideas and interventions to adopt or ignore, and are often cognizant of the global inequities and geopolitics that shape the interventions they are offered.⁴⁶ I draw upon these detailed works throughout this book to help me place regional trends in a local context.

. . .

The book is organized to mimic the progression of the medical research encounter from researchers’ arrival in a community to the final dismantling. Each of the major sections of the book addresses a moment in the research encounter: from arrivals (“Researchers Arrive”), to recruitment and consent practices (“Consent or Coercion?”), to the balancing of risks and benefits (“Balancing Risks and Benefits”), and, finally, to how experiments are ended and whether there are longer-term obligations (“Exits and Longer-Term Obligations”). A “section” of the book should be read as a single unit, since each begins with two case studies that raise themes more fully discussed in the analytic chapter that follows.

The historical and modern case studies that begin each section are meant to illustrate the continuity of ethical questions inherent to medical research in the region over the past century. These case studies are not examples of “good” or “bad” research. These narrative vignettes should, though, lead us to question assumptions about moral progress, since many of the same challenges facing medical researchers of the 1940s persist in 2010, and many of the most challenging ethical questions remain inadequately answered. The hope is that by placing historical examples in close proximity to modern ones, there will be fruitful reflections on the unresolved ethical problems of contemporary global health research in low-income settings, while also generating a deeper appreciation of the long history of problematic medical encounters in the region.

Chapter 2 presents an internal (emic) view of medical research from the perspective of East Africans. Although East African perceptions of and reactions to medical research projects are integrated throughout the book, this is the space where I introduce and explain some of the central misunderstandings. The following section, “Researchers Arrive,” highlights the process of arriving and initial interactions between researchers and a community. It focuses on two different disease elimination attempts, one in the Lamu Archipelago in the 1950s and another on Zanzibar Island in 2001. “Consent or Coercion?” reviews the practices of consent and delves into debates about therapeutic misconception in the region, as well as the broadening of consent beyond just an individual researcher and subject. These case studies present a UK-sponsored TB drug trial in Kenya in 1961, and a discussion of the important role over the past twenty-five years of African fieldworkers in medical research projects on the Kenyan coast. The next section, “Balancing Risks and Benefits,” discusses the disagreements about what constitute appropriate amounts of benefit and risk during medical research projects. The historical narrative charts the work of Hope Trant and the East African Medical Survey in 1954, and the modern case study focuses on the circumcision trial conducted in Rakai, Uganda, in 2005. “Exits and Longer-Term Obligations” discusses the difficulties of ending large-scale and long-term projects. The modern example focuses on the testing of the new malaria vaccine occurring since 2009, while the historical example dissects a failure to eliminate malaria in 1955. In conclusion, chapter 7 discusses the modern global medical research industry and moves more firmly into the realm of normative ethics, offering judgments about the ethics of some of the practices I’ve reconstructed and described in earlier chapters.

The book’s appendixes include a glossary of Swahili terms and an essay discussing further readings on human experimentation globally. Additional materials, developed to be used in undergraduate settings—including a set of teaching activities and digitized primary source materials—are available on my website (http://pages.uoregon.edu/graboyes/).