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EAST AFRICAN PERCEPTIONS OF MEDICAL RESEARCH

Mama Nzito, Dead Kids, and Bilharzia Research

I did not find Mama Nzito—she found me. I was in a small village outside the port city of Mwanza, searching for the oldest man in the village. A group of elders assured me that this particular man would be able to answer all of my questions, and they sent me off with vague directions. When I passed Mama Nzito working in her garden and explained who I was looking for, she offered to lead me to the tiny house. Inside, I discovered that the oldest man in the village really was quite old: he could barely hear, or speak above a whisper. Even so, I went ahead and tried to interview this Mzee (Mama and Mzee are both used to address elders). I pulled out a wrinkled consent form, an audio recorder, my notebook, and started speaking.

Since he couldn’t hear my questions, the Mzee’s first answers were entirely off topic and nearly unintelligible because they were delivered in a raspy whisper. Finally, in frustration, Mama Nzito began answering the questions I was directing at the old man. When I asked whether he had ever participated in medical research, Mama Nzito provided the response. In the 1960s, white “experts” (wataalum) came to her primary school, located in a village just down the road from where we were talking. After meeting with the headmaster and gaining his approval, these men gave the students “medicine” (dawa) in the form of injections and pills to “treat” (kutibu) their bilharzia.1 As Mama Nzito understood it, these medicines were just a cover; the researchers weren’t really there to treat any child’s disease. Their real intention was to enter the school, steal the students’ blood, and sell it. Worst of all, some children died in the process of blood extraction.2

When Mama Nzito finished talking, many questions remained: Why would the headmaster agree to let these experts steal the students’ blood? When and how did the children die? How was the blood stolen? Where was it sold, and to whom? I asked her these questions, and Mama Nzito had no answers. But, while she couldn’t answer my questions, she also didn’t back down in the face of my questioning. She sensed my growing skepticism and told me—with impeccable logic—that just because she didn’t know the specifics of how blood was stolen and what was done with it didn’t mean that it wasn’t true.

During the course of the hour-long interview, Mama Nzito spoke repeatedly of damu (blood), its value, and the government’s role in the stealing of it. As she discussed the work of medical researchers in her area, she also posed many questions without clear answers: “You will ask yourself: Why does he want my blood? Where will he send it? What will it be used for? . . . They will take your blood, but they won’t return with answers.”3 Linked with her discussion of damu were frequent references to dawa. As she saw it, dawa was a way to lure people to give blood, a common payment for blood, and an excuse to get into a place, like a school, where blood could be obtained. Mama Nzito raised the topics of damu and dawa together frequently enough to lodge both words firmly in my mind.

The story of children murdered by blood-stealing researchers should have been easy to dismiss—it followed the model of baseless and hard-to-believe rumor—but I found it difficult to dismiss as such. In this case, I discovered that a version of the story was well documented in local archives. Medical and police reports showed that in 1965, six children died at a school just up the road from Mama Nzito’s village after receiving an injection of a bilharzia drug.4 The deaths occurred at Busirasonga Primary School in Sima, in Geita District in western Tanzania. Six out of 123 children died after receiving an injection with a drug intended to treat bilharzia. The Ministry of Health called the administration of drugs at Busirasonga Primary School “mass treatment”; publicly, the deaths were attributed to poor-quality or inappropriately administered medicine. While it is impossible to know the actual cause of death, it is plausible that the mass treatment was part of a research project testing small variations in dose or treatment schedule—lending credence to the local idea that the children died at the hands of researchers.5

It’s worth noting that just one year before the deaths, the drug given as mass treatment in Busirasonga was still being tested by the East African Institute for Medical Research. The 1963–1964 drug trials of TWSb (sodium antimony dimercaptosuccinate) were conducted on school children in the Mwanza region to determine appropriate doses. A group of children were given the drug at school, while others were admitted as patients in the hospital and received much higher test dosages. Being part of the inpatient trial meant receiving up to five injections per day, and many children experienced side effects of anorexia, nausea, and vomiting. As the combination of the hospital stay, the frequent injections, and the obvious side effects made people increasingly nervous and angry, mothers pulled some of the children out of the project.6 The East African Institute for Medical Research was based in Mwanza and had been very active in testing bilharzia drugs in the region in the years prior to 1965. It’s quite likely that even if a particular family did not have a child who had received a drug either at school or in a hospital, they knew someone who had. The idea of “researchers” or “experts” arriving at a school with drugs in hand, with the sickness or death of children as the result, seems to have been well accepted and almost expected. In my own interview with an older couple, they recounted how “We’d hear that today they coming to the schools to test blood [kupimwa damu]. The parents would not send the kids to school because they didn’t want them to be killed . . . but maybe this is wrong.”7

Bwana Matende, Blood Stealing, and Filariasis Research

When I asked about medical research, many people told stories of Bwana Matende.8 Bwana is the Swahili word for “Mister” and can be used as a sign of respect; matende is elephantiasis, which is a common symptom of lymphatic filariasis. Thus, one translation for Bwana Matende is Mr. Elephantiasis.9 More important than the name, though, was the perceived true work of Bwana Matende: creeping around in the middle of the night, stealing African blood, and selling it internationally. He was a white doctor or researcher who worked in a lab in Mwanza near the government hospital. He stole and dealt in blood, and also gave out dawa. Mr. Elephantiasis sucked (kunyonya) blood—never to drink, but to sell. Bwana Matende was not a vampire but an unrepentant businessman.10 It was while pursuing his main goal of collecting blood to be sold that he inadvertently killed Africans. His unlucky subjects would be “finished” (kumaliziwa) and the body disposed of. The African blood was sold abroad for white people to make extremely potent dawa used in Europe and the United States. Bwana Matende was most active in the 1950s and 1960s, and was no longer in the Mwanza Region today.

As his name made clear, Bwana Matende focused on the disease of filariasis. One of the peculiarities of lymphatic filariasis is that, for accurate testing, blood samples must be taken between eleven at night and two in the morning, when the microfilariae are active in the peripheral blood.11 This medical necessity created a set of conditions that brought researchers during both the colonial and immediate postindependence eras into villages in the dead of night, where they would round people up in the center of town or go door to door, and take blood that they then stored in small vials. Those vials were carefully placed inside coolers, put into vehicles, and driven away to some unknown place, for an unknown use.

During interviews, stories of Bwana Matende frequently broadened into discussions of the connections between blood, medicine, money, and the government. In meandering accounts, people explained how African blood was stolen, that blood was turned into medicine, and that medicine was sold to Europeans or rich locals. The stories also had to explain why the government would allow citizens to be killed and their blood stolen. When asked if the government approved of Bwana Matende’s work, Tanzanians responded with a version of “Eh—the Government? He is the government!”12 As one man told me, if a person was unlucky enough to be taken by Bwana Matende, the police wouldn’t help. Since Bwana Matende was part of the government, the case would be closed, and the police officer would write that the death was due to “bad luck.”13

This linking of Bwana Matende with the government is important. He was active before, during, and after the Tanzanian independence and consolidation process of the early 1960s, and when I pressed people to be more specific about which government Bwana Matende was working for, they responded by saying “government is government.”14 Any government could be bloodthirsty or act as a profiteer on the back of its citizens—that was not a characteristic singular to the colonial state. By giving the government a role (even that of tacit bystander) in blood stealing, people implied that blood stealing, murder, and profiteering were open secrets.15 In fact, the Swahili word siri (secret) was often invoked during discussion of medical research, the government’s complicity in blood stealing, and the larger nature of government and its relationship to its citizens.

Aspects of the stories told about Bwana Matende resonate with the history of medical research in western Tanzania from the late 1940s through the 1960s. In the late 1940s, the Filariasis Research Unit and East African Medical Survey were established in the port city of Mwanza on Lake Victoria, and they continued to operate in the area through the 1960s; the original building still houses medical researchers today. The Filariasis Research Unit was particularly active, and thousands of East Africans came into contact with its members as they conducted large-scale surveys (to establish prevalence rates), tested new drugs, determined appropriate doses of effective therapies, and then attempted to provide mass treatment.16

In the decade between 1950 and 1960, well over 50,000 Tanganyikans had their blood taken by researchers during the darkest hours of the night.17 On Ukara Island alone, drug trials conducted in 1950 involved more than 35 percent of the population giving blood and taking pills. Thousands of other residents in villages around Mwanza also had blood samples taken at night and received experimental therapies in the form of pills and injections.18 Bwana Matende stories circulated and gained currency as European and African researchers entered villages under cover of darkness, took blood, and then quickly departed.

The Bwana Matende stories influenced how East Africans interacted with, and understood, medical researchers as a group. I asked a few different people how they could know whether a researcher was Bwana Matende or just a typical researcher—or how they might know when it was safe to participate, and when agreement could lead to blood theft and death. Mzee Thomas answered by explaining that, when you mix clean and dirty water, the water may still appear clean, but you know it is actually dirty. As he saw it, Bwana Matende was like a drop of dirty water infecting all researchers: as soon as Bwana Matende was present and people knew about him, all medical researchers were infected.19 Or, as Mama Nzito explained to me about the perils of keeping bad company, “If you sleep in a place for five minutes, you will start to stink like that place.”20 What this meant in practice was that if Bwana Matende existed (which many people believed, or at least couldn’t disprove), then medical researchers as a group were to be suspected. These suspicions were heightened by perceptions of government involvement.

The obvious overlaps between two different narratives—official accounts taken from government reports and research documents, and the “unofficial” understandings of East Africans participating in medical encounters—force us to recognize very different explanations of the same event. They also raise a set of challenging questions: Why do East Africans choose to talk about medical research in terms of damu and dawa and money and the government? What are the implications of the continued circulation of these stories, even though Bwana Matende supposedly finished his work fifty years ago? How has the residue of past projects, misunderstandings, mistreatment, and deaths stemming from medical research and public health projects shaded the present? How has this history of medical research shaped people’s understanding of, and participation in, current medical research projects?

. . .

In this chapter I show that stories about blood theft are firmly associated with biomedicine and biomedical research, and have been shaped by medical and public health encounters. I use the stories as a starting point to illustrate some of the ways modern East Africans choose to talk about medical research: through stories of blood theft, the invocation of researchers’ ability to kill or cure, the firm characterization of researchers as a generic group of experts with questionable ties to the government, and understanding medical research almost entirely through a lens of blood. The continued circulation of stories like that of Bwana Matende, and more general understandings of medical research that do not match up with Western definitions of it (either in terms of who is conducting such research, or what it consists of), profoundly influences the behavior of modern East Africans. Yet it is difficult to sort out precisely how and when East African understandings of blood, dawa, medical research, and its risks and benefits have changed. Modern East African understandings, and my portrayal of these notions, are clearly accumulated reflections based on decades of past experiences.

While this chapter builds upon a rich literature focused on East Africa, the themes presented speak to the work of social scientists and medical researchers beyond the region. Other large-scale medical campaigns carried out over the past century—often labeled as public health interventions, but where the activities were still experimental—suffered from similar instances of misunderstandings. The best-known and best-documented cases created unexpected, unintended, and devastating consequences that changed the human disease risk environment and set the stage for new epidemics. One obvious example is the Hepatitis C epidemic in Egypt that stemmed from schistosomiasis (bilharzia) control efforts in the 1950s.21 Another episode, with medical doctors being given permission to administer a province of French Cameroon in the early 1940s, led to an increase in sleeping sickness cases and generally poor health outcomes.22 Likewise, it has been suggested that French and Belgian policies in West and Central Africa of mass treatment for sleeping sickness not only contributed to Hepatitis C epidemics in the first half of the twentieth century, but created ripe conditions for the amplification of HIV from a local disease to a pandemic.23 While we continue to focus on East Africa, we must keep in mind that unfortunate outcomes coupled with deep misunderstandings were not unusual far beyond the region.

In response to the general question, “What is medical research?” most elders over sixty remarked on how strange and unusual it was. In Swahili, it was jambo geni sana (a very foreign thing), a thing of ajabu (wonder), and involved learning about vitu mbalimbali (faraway things).24 Interview responses indicated that people’s general understanding of research was still mostly descriptive and relied on associating research with specific people and their jobs (doctors, witch doctors, government employees), places (laboratories), and tools (microscopes, needles). Many people also described research in terms of the transactions researchers engaged in: they desired blood and bodily samples, and gave pills and injections in return. Residents rarely, if ever, identified research as the testing of new drugs or procedures. During only a handful of interviews was it mentioned that research could result in the development of new medicines. Only one man questioned how new therapies were produced. In the midst of discussing the smallpox vaccine, he told me residents in his village were happy to be vaccinated, but then went on to ask himself, “But where was it tested first? Perhaps in another place?”25 In fact, most of the individuals I formally interviewed believed research was being conducted in order to help or treat them.26 As one woman told me when opining that a healer was the same as a researcher, “even this mganga [healer] is a researcher because he investigates your disease and then he cures you.”27 What is important is that she specifies that a mganga researches your disease (ugonjwa wako) and then he cures you (anakutibu). By her definition, research identifies and cures diseases in individuals.

The rest of this chapter presents information from interviews and archival accounts that focus on how medical research and researchers were, and are, understood. I begin by discussing who researchers are associated with and what research is compared to, and provide some concluding thoughts about modern misunderstandings, including therapeutic misconception.

Who Are Researchers?

Many people explained the act of researching by trying to figure out who a researcher was or to whom he might be similar. Comparisons were made among healers (mganga, pl. waganga), biomedical doctors (daktari, pl. madaktari), other “experts” (mtaalam, pl. wataalam), government officials, and witches (mchawi, pl. wachawi). Occasionally people recognized the differences between the work of researchers and doctors or healers. As one man explained, “a researcher looks at things to discover if they are there, a doctor cures the things that are there.”28 Another man, when asked whether doctors and researchers did the same work, responded, “Without the researcher, a mganga can’t cure you. . . . Doctors can’t start to cure you without the researcher.”29 In the case of these responses, researchers were discoverers, and there was a symbiotic relationship between the work of researcher as discoverer and that of mganga/healer as curer of disease.

One way to piece together local perceptions of medical research is to look closely at the words being used. At the turn of the century, there was no specific word in Swahili capturing either the substantive act of research or the verb “to research.” Currently, most people use one of three words to describe the work of researchers, translatable as: to search or seek; to examine; and to spy. Table 2.1 shows the three major root verbs that are and have been used to discuss medical research.30

Table 2.1. Swahili words for “research” and translations


In a simple sense, the sets of words describe increasingly intensive forms of searching as you read down, in addition to having a more negative connotation. Kutafuta is the least value-laden, and is used widely to describe looking for objects, people, or more esoteric ideas, such as a better life.31 Kuchungua implies that the person has used an element of prying in order to gather information. Both kutafuta and kuchungua connote that the search for information is overt and even public, even if it is not appreciated. Kupeleleza, however, invokes a sense of criticism, almost always implying that this form of investigation involves a degree of furtiveness and covertness. For example, a Tanzanian assistant involved in medical work reported how “It was this spying on houses [kupeleleza vyumba] that upset” the public.32

Moving back up the table, mtafiti continues to be a word of choice when talking about researchers. Still, although relatively benign, it too hints that an acceptable activity has been carried out on the wrong scale: searching is fine, but searching too insistently is frowned upon. One man explained, “A researcher [mtafiti] is an important person because he indeed is the one who discovers everything [anayegundua kila kitu].”33 This supports the dictionary definitions of who a mtafiti is, yet there is a hint of excess since a researcher knows not just about disease, or bugs, but about “everything.” Even when one of the most neutral words, mtafiti, is used, the subtext of prying and invasiveness remains. There is one other word I heard used to describe researchers, and it is the only term that was positive: mtaalam, which can be translated as “expert” or “specialist.” Mtaalam (or mtaalamu) is connected to the term elimu, which is “knowledge or learning.” Someone who is referred to as mtaalam is educated, learned, and well-informed; he is a scholar or sage.34 When researchers were referred to in this way, it was less of a direct description of their work and more of a general commentary on their education and expert knowledge.

Healers and Harmers

There were two competing narratives about researchers that emerged, each focusing on very different aspects of their work. In the stories told by Mama Nzito and others, the focus was on blood theft and the murder of innocent Africans. Researchers were powerful experts who were sanctioned by the government and feared by locals. They were unsavory characters bent on making money, even if it meant sacrificing human life. In contrast, another set of stories—which appeared in nearly every interview, frequently alongside or intertwined with the first, malignant narrative—described benevolent researchers.35 In their positive descriptions of researchers, East Africans noted the similarity between researchers and doctors: they both gave out medicine and helped the sick recover.36 These behaviors meant research was described as kitu kizuri—a good thing.37 These starkly different characterizations of medical researchers were put forth by most of my interviewees, who saw no inherent contradiction between researchers as potential murderers and researchers as benevolent distributors of drugs. Researchers could be involved with both curing and killing. This willingness to maintain two contrasting impressions of researchers is likely tied to the fact that one of the figures a researcher might be compared with—a mganga—is commonly thought of as a powerful individual who can both harm and heal. As a variety of ethnographies from across East Africa have shown: “In the eyes of ordinary people both good and bad aspects of the doctor can be found in the same person. The mganga has power to protect and harm. . . . The common epitaph is ‘How can s/he cure witchcraft, if s/he is not an expert in it!’”38

The Zaramo of coastal Tanzania recognized that, “in practice, a mchawi [witch] may also be a mganga,” and, on the coast, both uchawi (black magic) and uganga (white magic) “may be practiced by the same individual.”39 Thus, the very ability to heal requires knowledge of how to harm. In some cases, a mganga is considered an actual witch, since “although he seems to be using his powers to help others, one cannot be sure about all his activities.”40 Only by understanding what causes illness (or, how to cause illness) can cures be discovered. And while a good mganga should always use his power in a positive way, there is always the potential for that ability to be abused. The mganga is treated, therefore, with a mixture of respect, caution, and fear—not so different from the way researchers were viewed.

For most of East Africa, the Swahili word mganga (or its analogue in other Bantu languages) is a broad term that can reference the healing performed through magic, the use of herbs or other medicines, bone setting, or divination. The Rhodesian medical doctor Michael Gelfand was particularly well positioned to comment on the role of a mganga, having been trained in biomedicine and then focusing on African medicine. He wrote:

European society has no one quite like the nganga [mganga], an individual to whom people turn in every kind of difficulty. He is a doctor in sickness, a priest in religious matters, a lawyer in legal issues, a policeman in the detection and prevention of crime, a possessor of magical preparations which can increase crops and instill special skills and talents into his clients. He fills a great need in society, his presence gives assurance to the whole community.41

Ludwig Krapf’s 1882 Swahili dictionary defines a mganga as “a medicine man who uses magic.”42 Maureen Malowany finds the definition significant because Krapf “was able to recognize both aspects of African medical practice: the diagnosing and treating of environment-caused diseases and the equally potent treatment of spiritually caused illness.”43 Among the Zaramo, the mganga’s role “is to heal, and they combine all methods of therapy in fulfilling that role, be they herbal, communal, religious or magical.”44 People going to a traditional mganga know their “case will be considered more completely than would be possible at a government hospital” and that a healer would typically treat the patient as part of a larger social and cultural whole.45

As healers and witches are understood to rely on the same skills, once researchers were compared with healers, it was not such a stretch to compare them to witches. There are many overlaps with the perceived behavior of witches and the observed behavior of researchers. Witch doctors often work at night and want blood; their uses for blood are socially unacceptable and they profit from working with highly personalized substances. Researchers also worked at night, collecting blood samples by going door to door or collecting night-biting mosquitoes by walking around in the bush. For both witches and researchers, blood was valued above all other substances and its use was shrouded in secrecy.46 People hesitated to make this comparison directly to me. However, in explaining the actions, beliefs, and fears of others, words related to witchcraft often arose. Residents would hide from giving blood since they were afraid it would be used to kuroga or kurogwa (bewitch) them or would be used for uchawi (witchcraft).47 There were also veiled references to how “those beliefs” (imani hizohizo) caused people to suspect the researchers.48

Researchers Are Researchers

While comparisons were drawn between researchers and witches and healers, researchers were also viewed as a homogenous group of people: they all arrived in cars, wore uniforms, were assisted by Africans, asked questions, ventured into the bush, used specialized and foreign tools, were educated, often spoke English, and could be overly curious in ways that offended local sensibilities.49 As a group, these researchers were busy collecting blood samples, either gathering villagers in the middle of the night or going house to house. Other researchers gathered everyone in a public space and asked people to partially disrobe so their skin could be evaluated for signs of leprosy. Still others had little interest in people and chose to focus on insects or cattle, venturing into swamps to collect mosquitoes or smearing livestock with liquid medicine. Although there were clearly many differences, those differences were not seen as especially consequential. The work was considered to be essentially the same.

This collapsing of all different types of researchers into a generic group was partially a result of the large amounts of research being done in certain parts of the region. Many colonial-era medical research projects employed dozens of specialists: entomologists, parasitologists, medical doctors, nutrition specialists, and nurses, in addition to a bevy of assistants and translators. The large number of researchers per project was compounded by the sheer quantity of projects starting, stopping, merging, and overlapping.50 In early 1955, the district officer in Taveta, Kenya, had to explain to the leaders of the ill-fated Aptitude Testing Project why local reception was so chilly.51 He recounted the history of their participation in different government-sponsored research, public health, and agriculture projects over the prior ten years. As he could personally attest, the WaTaveta people had already labored to implement irrigation schemes, given thousands of blood samples for parasitological examinations, and participated in multiple agricultural surveys. The multitude of projects going on in the region was not unusual. In the Pare region of Tanzania, just across the border, a government official praised the WaPare in 1952 as being very cooperative when it came to research and government campaigns. He noted that “They all fought for [plague] inoculation; the Banana Wilt campaign has caused no trouble and the filariasis sampling was done with no lack of volunteers.”52 On Pate Island in 1956, human blood sampling was occurring just a week before a livestock survey, and the government official noted, “it would be bad psychology to deal with both surveys simultaneously.”53

In each of these cases, the officials made distinctions between the different departments conducting research in the areas. But, for rural East Africans, there was likely no such distinction, as more and more researchers entered their villages and homes with questionnaires, needles, and tubes to collect all sorts of samples and information. Just as researchers were conflated into a generic set of expeRTS,So were their tools. Rubber tubes often appear as a “formulaic element” in many of the previously documented stories of blood theft—long, flexible tubes used to suck the blood of a person.54 Older women who lived in Nairobi reported that, in the 1920s, men would enter their houses as they slept, “carrying ‘a sort of sucking rubber tube.’”55 But rubber tubes were rarely—if ever—used for blood taking. For most medical research projects, only a tiny bit of blood for a slide is needed, and that drop of blood is taken by pricking the finger. (See figure 2.1 of a child being finger pricked and tubes sitting in the foreground.) For a more substantial blood draw, a needle was inserted directly into the vein of the arm, and blood was collected in a vial.

FIGURE 2.1. “Collecting blood in capillary tube for the C.M.R.” Source: East African Institute for Medical Research Report, 1958–59. Crown Copyright material is reproduced with the permission of the Controller of HMSO and the Queen’s Printer for Scotland.

Although medical researchers didn’t use tubes, entomologists did. More than likely, the rubber tubes appearing in many of these stories are the aspiration tubes used by entomologists for mosquito collection. During human landing catches (when a person waits for a mosquito to land on him so it can be collected and analyzed—ideally, before it bites), scientists use these long rubber tubes to suck the mosquito into a holding chamber before blowing it back into a netted trap to carry back to the laboratory for analysis. Thus, it is often entomologists who are seen creeping around at night in the “bush” (porini) to observe or destroy mosquito breeding sites, moving in and out of houses to set up and collect mosquito traps, and carrying around tubes that they suck on—all behaviors often attributed to blood-stealing medical researchers.

Researchers Are Government

In the same way that researchers were indistinguishable from each other, they were also considered an indistinguishable part of the larger government. Researchers appeared the same as other government officials in many important ways: they arrived in places bearing stamped and sealed letters of permission from government agencies, they received the chief’s assistance, and behaved like other state employees. The perceived link between researchers and the government was captured with the phrase ajili ya serikali—because of, or on account of, the government. When people used that phrase, it implied that research happened because the government made it happen, allowed it to happen, or forced it to happen—which is a relatively accurate statement. A majority of research projects were funded with government money. Any big project in East Africa had to have government permission, and researchers relied heavily on local chiefs in order to complete their research. Starting in the late 1940s, when the East African Council for Medical Research was established, even projects undertaken by private individuals came to be entwined with government.

These 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: that blood is often used as a proxy for general physical health, and that the distribution of blood outside the body is dangerous and should be avoided because it can jeopardize an individual’s physical, spiritual, or mental health.

Many East Africans make assessments of their physical health based on the general quality of their blood. Blood can be weak, strong, run quickly or slowly, and be sick or healthy.75 People are born with either weak or strong blood, and those with weak blood are more likely to become sick and less likely to make a full recovery after being ill. For example, on the Tanzanian coast, many mothers explained their children’s frequent illnesses by saying that the children “did not have enough blood in their body [damu hana or damu imepungua].” The mothers explained this lack of blood by citing numbers they were told at the local clinic, that a child had “only 40 percent” or “.5.” These figures referred to the hemoglobin levels that nurses and doctors had mentioned during consultation with the mothers.76 In explaining their children’s poor health, the mothers drew upon existing ideas of the relationship between the quality of blood and health, but also integrated biomedical information into their explanation, since the 40 percent and 0.5 indicated, to them, an actual lack of blood in the body.

As the above example implies, current conceptions of blood are neither static nor uninfluenced by biomedical ideas. Prior to the introduction of biomedicine in the late 1800s, it was common practice for East Africans to utilize a variety of healers including diviners, herbalists, and those specializing in Islamic medicine. As Europeans arrived, the search for effective treatment and persuasive explanations for diseases broadened again to include missionaries, who were considered just another set of “immigrants and traders.”77 Even outside the cosmopolitan Swahili Coast, there was a strong tradition of accepting foreign specialists, treatments, and explanatory systems. Among the Iraqw of Northern Tanzania, “the incorporation of an alien way of looking at and acting on illness” was not at all new.78 In Uganda, as Susan Reynolds Whyte argues, there is “reason to believe that the exotic has always played a part in Nyole and other East African medical systems.”79 In interviews with modern residents of Dar es Salaam, elders said that the “traditional,” or widely accepted, therapies for some diseases had significantly changed over the years—a change they attributed to “the greater presence of biomedicine in their lives.”80

Although we might be tempted to perceive here a replacement of one (traditional) system of thought with a biomedical (modern) one, that would not be accurate. It would be more precise to see ideas around health, disease, and healing that now exist in East Africa as syncretic.81 To discuss anything as “syncretic” is to imagine two or more distinct systems coming together to form something new—a third system—that borrows bit and pieces from each. This new, syncretic set of ideas concerning health is a patched-together mosaic of medical technologies, systems, and concepts. It is a product of a long history of medical pluralism that has involved centuries of contact with Ayurvedic and Islamic medicine in addition to biomedicine. It incorporates local ideas of witchcraft and sorcery, political and societal health being manifest though individual bodies, and a broad conception of “normal” health and appearance linked to day-to-day functionality.

There are clear examples of East African understandings of blood assuming syncretic forms. “Anemia” is translated in Swahili as upungufu wa damu, which is, literally, “deficiency of blood.”82 Traditional remedies dating back to the 1890s focus on “building” or “strengthening” the blood by eating “hot” foods such as beans, leafy greens, and raisins, which biomedicine identifies as being iron-rich.83 Thus, well before the first vitamin was identified in 1910, and before chemical analysis showed that these particular foods were iron-rich, it was enough to have a category of hot foods that would “strengthen the blood” through the production of the blood humor.84 Yet, biomedical understandings of blood are still constantly rubbing up against preexisting ideas, and that friction creates new explanatory models. When a boy died on the Kenyan Coast in the 1980s, people explained that he had “no blood in his body” and opined that the boy should have eaten “hot” foods. Still, in discussing his death with a foreign anthropologist, they were adamant that either hot foods or vitamins would have cured the boy, since both strengthened the blood.85

This system of medical syncretism forces biomedicine to exist with other, potentially contradictory beliefs. A clear example is many people’s understanding of malaria. From a biomedical perspective, malaria is spread by female anopheles mosquitoes, which carry a parasite from infected person to uninfected person. Every malaria infection can be classified into one of four types, produces a particular (and predictable) set of symptoms, and can be successfully treated with a number of different drugs. Yet, although there is widespread awareness of these biomedical expectations about malaria, they are not the only—or the dominant—local understandings of the disease. Multiple public health projects have found that most Tanzanians know that mosquitoes spread malaria.86 But the knowledge is not exclusive. Medical anthropologists have shown that, while people agree that mosquitoes cause malaria, there are also other well-known and widely accepted causes. As Susan Beckerleg reports, “the view that mosquitoes cause malaria by introducing wadudu [bugs/parasites] into the blood stream is not well accepted. . . . And even where accepted, the theory has to coexist with apparently contradictory causes such as changes in the wind.”87 In central Tanzania, people recognized mosquitoes as causing malaria, but also felt that exposure to “hot sun” and “hard work” could lead to malaria.88 In Ifakara, Tanzania (in the southeast), anthropologists found that people’s explanations for malaria often wove together notions of witchcraft with “knowledge of the biomedical cause of malaria.” They found that in addition to noting mosquito bites as a cause of malaria, other modes of transmission included drinking or wading through dirty water and/or being exposed to hot sun.89

One disagreement between biomedicine and indigenous health concepts centers on blood regeneration. From a biomedical perspective, blood regeneration occurs naturally: the body produces new blood in the same way that the heart beats or the lungs take in oxygen—without conscious thought on the part of the person. Thus, in this framework, the loss of small amounts of blood for donations or medical tests is not considered dangerous, and in most medical research projects blood taking is labeled as “no” or “low” risk. However, for many East African groups, blood regeneration is considered difficult if not impossible, and occurs only through conscious changes in diet or avoidance of certain behaviors. As it has been described among the Haya of western Tanzania, certain foods increase the blood (meat, green leafy vegetables, and fish) while others decrease it (coffee and citrus). Additionally, “hot” activities such as working in the sun or excessive sex can cause “illness such as feverish chills, which are characterized by a lack of blood.”90 In general, women and children are thought to have weaker blood and to be more at risk during procedures like blood donation or surgery because of the difficulty of blood regeneration.91

Disagreement about the ability or inability to regenerate blood means that East Africans and biomedical researchers are likely to come to radically different assessments of the risk of giving blood. This is partly linked to physical health: whether one will have enough blood in the body to be healthy and strong. A second concern regards the risk of having blood move through unknown hands in unknown places, opening oneself to the risk of witchcraft.92 The general feeling is that there are only a few acceptable occasions when blood can circulate outside the body, such as during marriage ceremonies or rituals to mark blood brotherhood or blood friendship. Moreover, even while blood is shared at such times, these are fraught exchanges. It is the very risk involved in sharing blood that emphasizes the depth of relationship with the person the blood is being shared with. By contrast, when the prospect of giving blood to an unknown foreign medical researcher is raised, an East African is likely to come to a very different assessment of the risk involved in such an encounter.

Stories about blood theft and medicines made from human blood have a long history. For at least the last 130 years, one frequently mentioned nefarious use for blood is as an ingredient for mumiani.93 The word mumiani is often translated today as a person, someone who is a “bloodsucker.”94 But, when the term was first recorded in the 1880s, it referred to a potent medicine made from human blood. Krapf’s 1882 Swahili dictionary defines mumiani as “a fabulous medicine which the Europeans prepare, in the opinion of the natives, from the blood of man.”95 In 1923, someone writing to the Swahili paper Mambo Leo noted that the word mumiani was a foreign one, but that people knew of it:

as we have heard, Mumiani is a medicine. Should a person fall and break a bone, any bone, if he is administered with this medicine the bone will heal. Whether this is true of false, those who say will know. Certainly there are those who say the medicine truly exists, especially around Lamu. I have no real need to contest this medicine, except for the way it is [said to be] obtained.

The meaning was largely unaltered in 1939, when Johnson’s dictionary described mumiani as:

a dark-coloured gum-like substance used by some Arabs, Indians and Swahili as a medicine for cramp, ague, broken bones. . . . It is used as an outward application, also when melted in ghee for drinking as a medicine. It is said to be brought from Persia, but many natives firmly believe that it is dried or coagulated human blood taken from victims murdered for the purpose, and when a rumor is started that mumiani is being sought for, the natives in a town are filled with terror and seldom go out of their houses after sunset.96

It is widely accepted that the term mumiani is an import, although from where is unclear.97 The fact that the medicine was made from human blood was repugnant but not surprising. As Simeon Mesaki notes, “Since human life is the most precious commodity . . . the most powerful dawa (medicine) may be sought from human flesh and blood.”98 Modern accounts from the Swahili Coast note similar beliefs about sorcerers using “human beings preserved half-alive as medicines.”99 In western Kenya, when discussing “research” and “blood,” one child “suggested that research and blood collection serve to produce new medicines,” while another girl wrote of how “Whites used to make medicines from blood and bodies.”100

These concerns about the loss of blood have been captured most clearly in relation to East Africans’ reluctance to participate in blood donation or blood bank programs since the technology was available in the mid-1940s. In colonial Nairobi, when Kenyan soldiers were encouraged to give blood, many refused, with half mentioning “fear of losing blood that could not be replaced.”101 The same fears were expressed around blood donation in western Tanzania, where 35 percent of the people polled at a variety of public and private hospitals in Mwanza Region viewed donation as harmful and believed that it could damage health.102 Clearly, damu is a concept that is broader than just “blood,” and one that carries with it a different set of perceived risks that would affect a person’s willingness to give blood. But, as the discussion of mumiani alluded to, there are also connections between blood and medicine: blood as an ingredient for medicine, and medicine given in return for blood in the medical research exchange. Furthermore, the possession and distribution of dawa (a powerful substance) makes researchers powerful and also dangerous people.

Research Is Medicine

As with damu, the Swahili word dawa benefits from a translation more nuanced than just “medicine.” Dawa is best thought of as something powerful, something that can have a good or bad effect, as an agent that causes a change. Among the Pogoro of Tanzania, medicine/dawa is “a generic category which refers to substances with transformative potential.”103 The concept of a “medicine” or the use of the specific term dawa is broad enough to refer to insecticides to kill mosquitoes, pills to treat a case of malaria, or an amulet meant to protect against witchcraft.104 An important characteristic of dawa is that it can be either curative or harmful—its most important quality was not the type of change it affected, but merely that it had the power to change a person, thing, or situation.105 “Medicines change the state of the person, either by curing, protecting and empowering or, for victims of witchcraft, by weakening, draining and poisoning.”106 The decision about whether dawa would harm or heal depended on the person using it—a healer who wanted to cure, or a witch who wanted to harm—and their knowledge and ability to use the medicine. “The special transformative powers of particular medicines are not intrinsic to the plants comprising them, but depend on the powers of the person who made them. Any plant, it is said, can become medicine in the right hands.”107 That belief was further reaffirmed through direct observation and experience. There is record of at least two herbal remedies used in East Africa prior to European colonization (Abrus precatorius to cure eye ailments, and Myrsinaceae root to treat worms) that are highly effective at appropriate dosage, but poisonous in higher quantities. It was only with specialized knowledge that a dawa could be guaranteed to be curative rather than dangerous.108

Is It Dawa or Not?

“Is it dawa or not?” was what one man living in the northern Tanzanian town of Mto wa Mbu asked when all of the salt sold in town was treated with chloroquine as a way to try to reduce malaria transmission. It was a fair question without a simple answer, since the salt was supposed to be dawa but didn’t end up being a very good one. The man’s question resonates on a larger level, however, and could be asked of all researchers showing up in villages with pills and syringes in hand. Was what they were handing out dawa, or not?

In the context of medical research, East Africans identify dawa as compensation for giving blood, and that dawa is believed to be powerful, effective, and curative. The biggest disconnect between the concept of dawa and that of medicine is the ability of the word medicine to be modified in a way that explicitly states or connotes experimental medicine. Despite the myriad modifications of the word dawa shown in table 2.2, the one constant is an assumed efficacy or potency. Thus, most problematically, there is no such thing as an experimental dawa. This difficulty of translation, and the assumptions about the potency of dawa, create a challenging situation where it is often unclear whether researchers are handing out dawa (i.e., effective medicine) or not.

Table 2.2. Swahili words for types of dawa (medicine) and translations


When I asked current medical researchers about how you might say “experimental medicine,” I was told emphatically that uneducated villagers would not understand such a concept. Medicine implied efficacy, otherwise it would not be called medicine. At my prodding to consider a hypothetical situation when one might need to convey the concept of experimental medicine, they suggested creating phrases using the verbs kujaribu (to try, to test) and kufanya kazi (to do work, to function), in addition to using the conditional form of verb conjugation to emphasize that something might happen and the uncertainness of a particular outcome.109

Multiple factors play into the perpetuation of this misunderstanding of medical research and confusion about what an experimental medicine is. It starts with people identifying the act of research as the act of taking and analyzing blood. The research encounter is framed as an exchange where a researcher takes blood and the subject is given medicine. The medicine is assumed to be effective since it is the payment for having given blood. This means that there may be a complete inversion of how the researcher and subject identify and weigh the risks and benefits of research. An East African may consider the drug as the benefit of research, while the research team, Institutional Review Board, or national ethical review boards will see the taking of an experimental drug as a risk of research. Furthermore, while the East African may see giving blood to a foreigner as a risky endeavor because of threats to personal health and the potential for witchcraft, the research team may consider blood taking (and the possible identification of disease) as a benefit of participating in the project. This conflicting understanding of what actually constitutes the risk and benefit of research almost guarantees that the East African participant and medical professional will come to different conclusions about such risks and benefits. It also means that by labeling both experimental and proven drugs as dawa there is 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

. . .

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.

The Experiment Must Continue

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