The Experiment Must Continue. Melissa Graboyes
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; Hannah Carr worked with me over many months in Eugene; and Lindsay Murphy stepped in at the final, crucial moment. I am appreciative for all their assistance, and for their combined abilities to locate obscure sources, manage buggy databases, and handle inordinate amounts of email. Chris Becker carefully produced all the maps. The team at Ohio University Press was stellar: professional, punctual and meticulous. I enjoyed working with them, and they greatly improved the final product.
And, finally, I can thank in print my friends and family. Research and writing happened over nearly a decade and across three continents. Personal friends in Eugene helped make finishing this book easier to bear; many good times have been had with Katie and Grant Schoonover both on running trails and around the dinner table. Erica and Tom Collins, Daphne Gallagher and Stephen Dueppen, Lindsay Braun and Larissa Ennis, Heather McClure, Kristin Yarris, and Sharon Kaplan have all been great company and superb supporters when my motivation waned. There has also been a solid cohort of friends from graduate school who have tolerated many emails and phone calls full of questions; Arianna Fogelman, Lynsey Farrell, and Andrea Mosterman deserve particular thanks.
Finally, as my dedication referenced, each of my families has been instrumental in helping me to finish this project. My parents, Sue and Tony Graboyes, have been an inspiration in their own ethos of hard work, and my father was a constant (if sometimes nagging) reminder that I was not finished. The extended Famiglia Burlando—particularly Liliana Molano and Franco Burlando—showed great tolerance for working summer vacations. Our time in Italy is full of meals we don’t have to cook, clothes that we don’t have to launder, iron, or fold, and impromptu gatherings that we don’t have to plan, but which involve my favorite Zii (Nino, Vittoria, Paolo, Daniela). I am nearly certain that it’s only with this type of assistance that a large task—like the writing of a book—can occur while having a small child underfoot.
The person most deserving of thanks is Alfredo Burlando. I am very lucky to have a partner in life who is a constant source of intellectual stimulation and unquestioning support. Much of my time in East Africa happened with him by my side, and we have learned about the region together. Alfredo listened to many of these arguments take shape and was a willing reader even though my book includes no mathematical equations and few charts. Depending on the day and the need, he has cooked, cleaned, changed diapers, edited, and even helped with the odd footnote. He and Silvia have borne the brunt of long, odd, work hours without too many complaints; I love them both for that, and much, much more.
ABBREVIATIONS
AIDS | Acquired Immunodeficiency Syndrome |
ART | Antiretroviral Therapy |
CDC | Centers |