The Experiment Must Continue. Melissa Graboyes
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