The Experiment Must Continue. Melissa Graboyes. Читать онлайн. Newlib. NEWLIB.NET

Автор: Melissa Graboyes
Издательство: Ingram
Серия: Perspectives on Global Health
Жанр произведения: Медицина
Год издания: 0
isbn: 9780821445341
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looked at me quizzically.

      The experience on Ukara Island reemphasized the importance of actually visiting a place and talking with the people who had lived through these events, and of searching out materials in more unusual places. I didn’t entirely ignore traditional archives. I spent weeks and months in the Kenyan National Archives, the Zanzibar National Archives, the Public Records Office in London, and the Wellcome Library in London, in addition to accessing digital materials of the World Health Organization. But I quickly realized that materials in these places were unlikely to answer the questions about human experimentation I was most interested in. I didn’t want to rely on official reports housed in the national archives, and be left “listening for the silences” of African voices. In this spirit, I prioritized visiting places where research stations were located, or where large-scale projects had taken place. After fourteen months of research in East Africa, I had gathered archival and oral data in a dozen different locations, ranging from mission hospitals to remote islands in Lake Victoria.

      Two of the colonial-era research stations were in the northern Tanzanian town of Amani and in western Tanzania in Mwanza. (Amani has a fascinating, long history, having originally been built by the Germans as an agricultural and forestry research station.8) These two places ended up providing thousands of pages of uncatalogued documents that few—if any—other scholars have used and written about. The materials included the private papers of medical researchers who worked for the Pare-Taveta Malaria Scheme, the East African Medical Survey and the Filariasis Research Unit. There were confidential research reports, letters written by frustrated field workers to their bosses in the cities, notes in Swahili from angry residents who objected to research being done in their villages, and newspaper clippings reporting both the organizations’ press releases and residents’ reactions.9 Very few of these documents exist in duplicate in other archives; many documents only reside in Mwanza and Amani.

      I stayed for weeks in each location, and it was invigorating work, since each day led to new discoveries. But, for all the excitement of historical discovery, working in Mwanza and Amani was not without challenges. The documents were entirely disorganized, and after receiving approval to work with materials in Mwanza, I was furious when a mid-level bureaucrat denied me entry. When I found a sympathetic co-worker to unlock the room where the documents were, I spent another day working through the materials. I did, however, wonder if I had actually become a “thief”—which was what the angry bureaucrat yelled at me when he returned the next day to find me inside the office.

      I wasn’t so blind as to be ignorant of the irony, or the myriad ways my own challenges mimicked those of earlier medical researchers. There I was, accused of being a “thief” and “stealing” documents, writing about the challenges of medical researchers who were also called thieves and accused of stealing blood. The challenges of field research in East Africa often created morally ambiguous situations: situations where I had to figure out how to translate formal ethics into field ethics. Should I bribe someone to get access to materials? (No, but a heavy dose of persuasion and pestering was acceptable.) Was I a “thief” for figuring out a way to use documents one man had prohibited me from seeing? (No, because he had no formal authority to make that decision, and I had been granted access by those in charge.) Did people actually understand and value my project, or were they just letting me do what I wanted because I was a white foreigner handing out gifts? (Hard to say.) There were no easy answers, but this discomfort and self-questioning bred a deeper appreciation of the challenging situations any type of researcher encounters.

      FIGURE 1.1. Uncataloged archival materials at Amani Medical Research Station, Amani, Tanzania, 2008. Photo by author.

      In addition to the archival materials, oral sources derived through semistructured interviews were my other source of information. I conducted a total of forty-three formal interviews with people who participated in medical research (as subjects or members of the community who assisted in the research), professional medical researchers during the colonial or postcolonial eras, missionaries who helped researchers gather participants, and with East Africans who lived in communities where medical research had been conducted. Interviews typically lasted about an hour, although a few of the livelier ones went on for two to three hours. I asked questions about what “research” was; past experiences with medical researchers, or working as medical researchers; and opinions about difficult medical scenarios I described. Asking about research was complicated since the topic was not well understood by people. That usually led me to ask if the person had ever given blood, taken pills or received shots outside of the hospital, or met a roving “doctor” or “expert” who was doing “research” or an “investigation.” Although I spent a lot of time conducting formal interviews, many of my best insights came from conversations with a mix of health professionals, young people, amateur historians, and the best chicken fryer in Zanzibar. These informal exchanges gave me a chance to talk about my research and have lively discussions without falling into the rigidity of a formal interview.

      I analyzed the oral and written sources in dialogue with each other and paid close attention to places of discord—when the oral and archival sources were in clear conflict. In some cases, I was able to “right” these disagreements; in other cases, a level of ambiguity remains. I did not begin by assuming that my oral sources were any less accurate or “factual” than the written sources, nor that the value of my interviews was only in preserving people’s opinions, impressions, or understandings of past encounters. In this way, I depart from the approach taken by Luise White in her groundbreaking and creative work on blood rumors in East Africa—a topic I discuss more fully in the conclusion of chapter 2.

      Everyone formally interviewed consented orally after receiving a written description of my research and listening to me read the document aloud. When I audio-recorded interviews, I asked permission at the start and again at the end of the interview, offering to delete the recording if the person felt we had discussed overly sensitive topics. I took it as evidence that my consent process was working when some people refused to be interviewed. At the conclusion of the interview, I presented a gift that was typically worth about five US dollars—often sugar, soap, or tea, although it was sometimes cash. I typically conducted the interview in Swahili, although there was often another person present (usually an older male) who had facilitated the introduction and helped clarify any questions or confusions that came up. The interviews were transcribed with the help of Tanzanian research assistants in Mwanza and Zanzibar. I was responsible for all translations from Swahili into English, although I have double-checked difficult passages with native speakers. As for interviews not done in Swahili, a few were conducted in KiKara or KiKerewe and required an intermediary translator, and a few others were in English.

      I was surprised to rediscover, even while speaking Swahili and coming with contacts, how hard it was to show up in a new place, establish yourself, explain your project, and hope people would at least tolerate—if not accept—you. As my interviewees reminded me, I was a researcher and struggled with many of the same issues researchers over the past half-century have struggled with—consent, benefit, and clarity of explanation—even if I was only asking questions and not collecting blood. And, just as with researchers from decades past, my methods in practice were quite different from what I had theorized. My questions (lovingly crafted in Boston with the oversight of many experienced professionals) were designed to be nonbiased, culturally sensitive, and nonthreatening. Yet those questions were tossed to the side as I saw their inefficacy firsthand. My haute methodology met its match in rural Tanzania through a series of challenging interviews full of evasive answers and misunderstood questions.

      This research occurred under the watchful eye of Boston University’s Institutional Review Board (IRB). The university’s interpretation of federal guidelines meant that I initially collected signatures from nonliterate people and kept interview transcripts under “lock and key,” even though I couldn’t stop people from walking into my hotel room and out with my laptop. My methods produced viable results and a long list of things to do differently in the future. Most notably, I will keep in mind the conclusions I reached for this book. There