The Experiment Must Continue. Melissa Graboyes
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