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/).
PERCEPTIONS
2
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
