The Experiment Must Continue. Melissa Graboyes

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The Experiment Must Continue - Melissa Graboyes Perspectives on Global Health

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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.

      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

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