The Experiment Must Continue. Melissa Graboyes

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СКАЧАТЬ Finally, since East Africans were active participants in these encounters, it follows that the ethical norms that came to characterize field ethics in East Africa were not just dependent on the desires of European researchers, or on the result of theoretical ethics being placed in a field-research environment. Rather, the dialogic period and the medical encounters, which necessitated the participation of both researcher and subject, led to the creation of a hybrid ethical form, which may be referred to as “everyday ethics” or “field ethics.”

      Research Is Jambo Geni Sana (a Very Foreign Thing)

      There was, and is, very little shared understanding of the key components of what medical research is, who does the research and why, and what constitutes the risks and benefits. As is explained in chapter 2, many East Africans continue to discuss medical research in terms of blood, and, more specifically, state that research consists of taking blood, and that the “risk” of research is losing blood from the body or having it circulate outside the body. There is also a widespread misunderstanding that the benefits of participating in research are the medicine (dawa) that is given out by researchers. Medical researchers are often labeled as a generic type of expert, and are on occasion likened to traditional healers who have the potential to both harm and heal. The reasons why research is done are particularly hazy, with many people claiming the goal is to discover disease and treat individuals. Therapeutic misconception—the belief that research is being done to benefit the individual—is rife, and creates serious questions about the quality of participants’ consent.

      Anthropological work from Kenya indicates that these types of confusion exist into the modern period. In general, “the concept of research and of different studies remains difficult to get across.”²⁹ A group of scientists and anthropologists working on the Kenyan Coast have admitted that despite lengthy and thorough explanations of their projects to residents, they consider “incomplete levels of understanding, or ‘half knowing,’” as almost inevitable.³⁰ This group has gone so far as to question whether it’s a gulf that can be bridged, noting that “it may be very difficult, arguably impossible” to help some participants understand the nature, goals, and activities of specific medical research projects.³¹ These are some of the researchers most committed to trying innovative new strategies to ensure research is understood, which makes these findings particularly troubling, and even more important to acknowledge.

      Research as a Transaction: Gifts and Commodities

      One of the surprising areas of agreement both historically and in the present is how both subjects and researchers discuss medical research as a type of transaction or exchange. Colonial researchers enmeshed themselves in a series of economic exchanges that often started the moment they arrived in a field site and needed transportation, food, and lodging, and began to either pay generously or haggle while complaining about unfair prices. Researchers linked themselves to communities via favors, salaries, and what they offered residents to participate in the projects. Economies sprang up for items desired by researchers which would not otherwise have been traded openly: it became common to exchange blood for pills, urine for car rides, stool samples for medical examinations.³² This web of debt and indebtedness helped tie a foreign researcher to a community and contribute to trust or distrust.

      Even with a shared conceptualization of medical research as a transaction, there is still gray area in defining the type of transaction. An object moving from one person to another can fall anywhere within the extremes of giving voluntarily, with no expectation of anything in return, to forcibly taking something without payment. Some might frame this as a choice between Mauss’s gift or Marx’s commoditization.³³ On the one hand, medical research could be characterized as being dependent upon commoditization of pieces of the body such as blood, skin, urine, and stool.³⁴ These items were physically separated from an individual, had a value, and were exchanged between the person who “produced” the substance and the researcher who valued it. On the other hand, it’s doubtful that these exchanges were wholly about commoditization. The anthropologist Parker Shipton has argued persuasively that in Luo country in western Kenya, “there is no systemic ‘gift economy’ or ‘commodity economy’ but rather exchanges that weave in and out of these principles.”³⁵

      Moral economy may perhaps be a more appropriate framework for considering these transactions. The anthropologist Ruth Prince describes how the term captures “the shared mores and values with which people evaluate their relations with others, from economic transactions to the obligations informing social hierarchies and patterns of accumulation, including relations between political elites, states, and citizens.”³⁶ It should come as no surprise that as blood and other valuable substances moved from a body to outside a body, there were often disagreements about what type of exchange was taking place, whether it was equitable, whether the person was to trusted.³⁷ These transactions allowed for judgments to be made about researchers, for trust to be established and relationships to be created—all out of a transfer of bodily products from one person to another. However, if the exchanges of medical research were sometimes considered gifts and other times considered commodities, it meant that there were countless opportunities for miscommunication. Modern findings about medical research in the West African nation of The Gambia found that scientists and communities often came to “radically different framings” of the exchanges they were participating in, which could lead medical researchers to believe “that what they take from subjects is a gift rather than part of a transaction, and thus act in ways that from the other side appear to be stealing.”³⁸ If a participant believes she is participating in an inequitable exchange and may have been the victim of theft, it is no surprise that conflict often results.

      Research as a Space of Conflict

      “Conflict,” broadly defined, runs through each of the chapters; nearly every case study has moments of tension or places where research is put in jeopardy. The reasons were not always clear, since many of the projects at first glance look benign. These moments of conflict illuminate two important points. The first is that disagreements between researchers and East African participants were frequent, but that the arrangement of power was unpredictable. The fact that there was conflict indicated that people were not the docile subjects some past accounts have implied, and power was rarely effectively exerted upon subjects for very long. More frequently, participants demonstrate an ability to resist effectively, or at least mitigate, the control of individual researchers or larger projects. (I am wary of labeling these cases of researcher and community conflict as “resistance” since the term is too often used as shorthand for resistance against the colonial state. I am far more comfortable explaining it in terms of the very real dissatisfaction and discontent bubbling up because of specific projects, particular researchers and discrete interactions.³⁹) The second point about conflict is less obvious, and often overlooked in the literature about colonial science. That is, that colonial researchers were frequently in conflict with each other and that their disagreements illustrate the diversity of opinions existing within a supposedly unified and homogenous organization. The information presented throughout the book on the divisions in colonial opinion forces us to develop a more nuanced perspective on how colonial science functioned in East Africa.

      One of the limitations of my argument is that I cannot speak to divisions within a community, and whether the resistance researchers perceived as all-encompassing was actually so unified. In many of these case studies, if there were significant fissures in villagers’ opinions (breaking on the lines of gender, class, religion, ethnicity, age, etc.), the data I have do not reveal it. This does not mean such fissures did not exist, but the dissent in these communities was widespread enough to present what looked like a unified front to bewildered and frustrated researchers. If the divisions in public opinion had been big enough, it seems someone—the researchers, the chief, a sympathetic villager—would have tipped the medical workers off. Researchers had no qualms about trying to appeal to whatever sympathetic factions they could find, but the data rarely reveals such divisions. It is also worth noting that I do not formally address СКАЧАТЬ