is not an inadvertent oversight, but a result of the data I was able to gather: a majority of the researchers and participants available to be interviewed were male. Among the women I did speak with and who emerged in the archival documents, I was not able to discern themes or arguments on the basis of gender that felt adequately evidenced. It is a topic that I hope to pursue in the future, especially given the rich materials provided by Dr. Hope Trant, who is discussed in chapter 5.
Research and the Production of Everyday Ethics
This book’s final argument is that what came to be the norms of medical research—the accepted practices, how work actually got done, and the myriad compromises and modifications that required—were the product of negotiations. Clearly stated, researchers and participants were both responsible for establishing the norms of day-to-day medical research practice. East Africans regularly surprised and frustrated researchers by being such active research participants, and their preferences and demands forced researchers to modify scientific plans. Africans absconded from projects that didn’t fulfill their needs, shut down projects that didn’t align with their interests, or modified them in ways that better accommodated their own expectations of fair benefit, acceptable risk, or norms of the body and healer-patient relationships. As one example, plans to take blood in the middle of the night to test for lymphatic filariasis were abandoned after people refused to participate. Instead, blood was taken in the early evening, even though this was a less accurate method for testing and led to biased and problematic results.
In recent years, the distinguished medical anthropologist Arthur Kleinman has called for a shift in medical ethics so that they are “the outcome of reciprocal, participatory engagement across different worlds of experience.”40 I agree with the sentiment, but I disagree with one of the assumptions: that current medical ethics are not the result of participatory engagement. Many, if not all, of the case studies in this book show that East Africans have made their preferences known, shaped practices in the field, and worked to create new forms of medical ethics that accorded with their own wishes and expectations. The “everyday ethics” governing medical research interactions in East African communities are the result of what the anthropologist Wenzel Geissler terms an “ethics of collaboration.”41 While formal ethics as stipulated in various human rights documents are well intentioned, they tend to discount or ignore “what happens when one person responds to the other in open-ended, face-to-face relations that occur within the field.”42 In response to this shortcoming, anthropologists have introduced the terms “everyday ethics” and “field ethics” that focus on “the ethics guiding the everyday life of research.”43 A few words of caution here: by arguing that African subjects were active in establishing norms, I am not claiming that these interactions were fair, just, or ethical. Research was often deceptive, coercive, and exploitative, and there were power differentials between government-sanctioned researchers and colonial subjects/East African citizens that we must remain attentive to. Although I do use the terms “everyday ethics” and “field ethics,” they are problematic precisely because they sound benign, and may allow us to be too complacent when discussing exchanges that were deeply unequal.
Book Scope and Organization
The temporal and geographic scope of this book is unusual in that historians do not typically analyze the present, and anthropologists and bioethicists rarely look systematically to the past. The seven-decade span beginning in 1940 allows us to take account of change over a broad swath of time, to construct both historical and modern analyses, and to locate much continuity. Although there were cases of medical research in the region prior to 1940, it grew significantly in the following decades; it was only post-1940 that there came an infusion of British colonial funds and the creation of a more coordinated regional bureaucracy. (Discussions of medical research earlier in the century, as well as of the changes occurring in 1940, are found in appendix B and a related journal article.)
It is also unusual for Africanist historians to take a regional approach—one that I feel is more than appropriate for this topic. Post–World War I, all of East Africa was administered by the British (Tanganyika and Uganda as protectorates and Kenya as a colony), which led to the creation of regional research institutes, shared medical experiments and personnel, and a set of ethical questions around human experimentation that were more similar than different. Ecologically, the countries share many disease environments, and conditions such as trypanosomiasis (sleeping sickness), malaria, schistosomiasis (bilharzia), onchocerciasis (river blindness), and lymphatic filariasis were all widespread, as were conditions such as dysentery, diarrheal diseases, leprosy, ulcers, and yaws.44 The fact that diseases did not, and do not, respect national boundaries created an incentive for shared research projects; it also sometimes incentivized heavy-handed research practices that ignored the needs and norms of East African communities. There is also something deeply practical about studying this region as a region, as projects continue to be shared and shaped across national boundaries, and I maintain that despite East African diversity, these are places more similar than different. A regional approach may also make the modern relevance of my arguments and conclusions more readily apparently.
I feel obliged to point out that, despite taking a regional approach, I have benefited greatly from other scholars’ micro-histories and medical ethnographies focused on specific communities. Literature on the topics of health, healing, and disease in East Africa, such as by Steven Feierman, John Janzen, and Meghan Vaughan, and works covering other areas of sub-Saharan Africa, have influenced my thinking and framing of this book.45 I’ve also been inspired by a very dynamic set of new medical ethnographies focused on eastern and southern Africa. Recent books by Johanna Crane, Stacey Langwick, Julie Livingston, and Claire Wendland, in addition to the bountiful writings of Susan Reynolds Whyte, have all shown how biomedicine is constantly engaged with, or perhaps entangled with, the African people and places in which it operates. These works have persuasively shown that African communities have clear ideas about what fair relationships should look like, carefully choose which biomedical ideas and interventions to adopt or ignore, and are often cognizant of the global inequities and geopolitics that shape the interventions they are offered.46 I draw upon these detailed works throughout this book to help me place regional trends in a local context.
. . .
The book is organized to mimic the progression of the medical research encounter from researchers’ arrival in a community to the final dismantling. Each of the major sections of the book addresses a moment in the research encounter: from arrivals (“Researchers Arrive”), to recruitment and consent practices (“Consent or Coercion?”), to the balancing of risks and benefits (“Balancing Risks and Benefits”), and, finally, to how experiments are ended and whether there are longer-term obligations (“Exits and Longer-Term Obligations”). A “section” of the book should be read as a single unit, since each begins with two case studies that raise themes more fully discussed in the analytic chapter that follows.
The historical and modern case studies that begin each section are meant to illustrate the continuity of ethical questions inherent to medical research in the region over the past century. These case studies are not examples of “good” or “bad” research. These narrative vignettes should, though, lead us to question assumptions about moral progress, since many of the same challenges facing medical researchers of the 1940s persist in 2010, and many of the most challenging ethical questions remain inadequately answered. The hope is that by placing historical examples in close proximity to modern ones, there will be fruitful reflections on the unresolved ethical problems of contemporary global health research in low-income settings, while also generating a deeper appreciation of the long history of problematic medical encounters in the region.
Chapter 2 presents an internal (emic) view of medical research from the perspective of East Africans. Although East African perceptions of and reactions to medical research projects are integrated throughout the book, this is the space where
