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 is often a profound gap between formal ethics and field ethics; one must be nimble, adapt to local conditions, and take cues from the subjects one is working with, who must always be considered active and vital participants in the research enterprise.
ACKNOWLEDGMENTS
This book’s subject matter speaks to the potential misuse of people, historically and in the present, and asks hard questions about why we do medical research, at what cost, who benefits, and whether those benefits are worth the risks we ask some people to bear. I felt a deep duty to do justice to this topic, to the stories people told me, and to not become cynical or immune to the worrisome things I found and heard. The information I collected over the years has not been easy to sit with. The constant rattling around of stories heard in interviews, and the heaviness of information gathered from the archives, reminded me that until I published this book, my debt to the many people who invested in me had not been met. This work is far from perfect, and the remaining shortcomings and errors are my own responsibility. However, I have done my best to fulfill my obligation to the many East Africans who spent time with me, the individuals who helped shape my thinking about this topic, the institutions that provided financial support, and the many friends and family members who supported this project by supporting me.
My time in graduate school at Boston University was formative and I thank my advisors James McCann and Diana Wylie in the Department of History and Michael Grodin at the School of Public Health. All were generous and helpful, and I consider their scholarship to be models for my own work in so many ways. Courses taken with George Annas and Leonard Glantz at the BU School of Public Health deepened my knowledge of human rights law and ethics and the history of medical research in general. I have only fond memories of BU’s African Studies Center: Michael DiBlasi, Barbara Brown, Ed Bustin, Joanne Hart, Jean Hay, Sandi McCann, Judith Mmari, James Pritchett, and Parker Shipton helped train me and became good friends. I have a great admiration for this group’s collegiality and generosity. I am also thankful to those organizations that provided funding: two years of a US Department of Education Foreign Language and Areas Studies grant and three years of funding from the National Science Foundation. Additional funding came from the Boston University Graduate Writing Fellowship Program, Department of History, African Studies Center, and the Boston University School of Public Health. Research clearance and oversight was provided by the Zanzibar National Archives, the Tanzania Commission for Science and Technology (COSTECH), and Boston University’s IRB.
Many people helped me during fieldwork in East Africa, but probably none more than my friend, Hamza Zakaria. He and his family made us feel at home in Dar es Salaam a decade ago, and then extended the welcome to Zanzibar. In Zanzibar in 2008, Juli McGruder, Charlotte Miller and Mattar Ali, and Erin Mahaffey and Adam Grauer all made life more fun and shared important information about history, medicine, and life in East Africa. Mwalimu Jecha at the State University of Zanzibar’s language institute spent many hours helping me improve my Swahili. Mwanza and Bukumbi were so enjoyable because of the hospitality of Dr. Mugema and his family, and Mzee Kitaringo and his family. At the NIMR offices in Mwanza, Dr. Changalucha granted me access to the library and pointed me toward other helpful individuals. On Ukerewe and Ukara Islands, Mzee Majula and his son Dickson were excellent hosts. In Kenya, many thanks to Wenzel Geissler and his family for welcoming me in Kisumu. In Nairobi, Reuben Lugalia and Humphrey Mazigo provided great company and answered plenty of questions related to current medical research. I’m grateful for the help of the Tanzania National Institute of Medical Research workers: Dr. Leonard Mboera, Dr. Stephen Magesa and Dr. Yahya Athman, who all spoke with me at the early stages of my work. I am also obviously grateful to the many people who agreed to be interviewed.
Many generous colleagues have discussed ideas, read chapters, and provided sources. A very special thank you to my friend Daphne Gallagher for meticulously commenting on a bulk of the chapters; she is a formidable scholar and her thoughtful criticisms greatly improved this book. A real benefit of living in the Pacific Northwest is having Jennifer Tappan as a colleague, and my ideas are much more nuanced because of ongoing conversations with her. Mari Webel, on the other hand, is a long-distance colleague, but our Skype conversations are no less helpful. During the writing of my dissertation and beyond, James Webb was ready to discuss all things malaria and to provide encouragement and advice about tackling such a large project. At the University of Oregon, Vera Keller and the History of Science reading group provided feedback on an early chapter. Mokaya Bosire helped parse Swahili terms and meanings with me, and was always ready to talk about East Africa. Kristin Yarris has provided moral support in addition to being an excellent sounding board on issues of global health and medical anthropology. I was able to present parts of this work at the Health in Africa Workshop at the African Studies Association in 2012; the Institute of African Studies at Columbia University in 2013; and the University of Oregon’s African Studies Lecture Series in 2014. I’d also like to thank my students in the University of Oregon courses “Health and Development in Africa” and “History of East Africa,” who read draft book chapters, asked thoughtful questions, and served as constructive readers. Pieces of chapters 1 and 6 were printed in a special issue of the International Journal of African Historical Studies, and a section of chapter 4 was published in Developing World Bioethics.1 My thanks to the editors for permission to reprint.
I had four excellent research assistants during the course of writing this book. In Zanzibar, Mohammed Idrisa did much of the interview transcription work; Zachary Gersten assisted in Boston;
