The Experiment Must Continue. Melissa Graboyes
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 I introduce and explain some of the central misunderstandings. The following section, “Researchers Arrive,” highlights the process of arriving and initial interactions between researchers and a community. It focuses on two different disease elimination attempts, one in the Lamu Archipelago in the 1950s and another on Zanzibar Island in 2001. “Consent or Coercion?” reviews the practices of consent and delves into debates about therapeutic misconception in the region, as well as the broadening of consent beyond just an individual researcher and subject. These case studies present a UK-sponsored TB drug trial in Kenya in 1961, and a discussion of the important role over the past twenty-five years of African fieldworkers in medical research projects on the Kenyan coast. The next section, “Balancing Risks and Benefits,” discusses the disagreements about what constitute appropriate amounts of benefit and risk during medical research projects. The historical narrative charts the work of Hope Trant and the East African Medical Survey in 1954, and the modern case study focuses on the circumcision trial conducted in Rakai, Uganda, in 2005. “Exits and Longer-Term Obligations” discusses the difficulties of ending large-scale and long-term projects. The modern example focuses on the testing of the new malaria vaccine occurring since 2009, while the historical example dissects a failure to eliminate malaria in 1955. In conclusion, chapter 7 discusses the modern global medical research industry and moves more firmly into the realm of normative ethics, offering judgments about the ethics of some of the practices I’ve reconstructed and described in earlier chapters.
The book’s appendixes include a glossary of Swahili terms and an essay discussing further readings on human experimentation globally. Additional materials, developed to be used in undergraduate settings—including a set of teaching activities and digitized primary source materials—are available on my website (http://pages.uoregon.edu/graboyes/).
PERCEPTIONS
2
EAST AFRICAN PERCEPTIONS OF MEDICAL RESEARCH
Mama Nzito, Dead Kids, and Bilharzia Research
I did not find Mama Nzito—she found me. I was in a small village outside the port city of Mwanza, searching for the oldest man in the village. A group of elders assured me that this particular man would be able to answer all of my questions, and they sent me off with vague directions. When I passed Mama Nzito working in her garden and explained who I was looking for, she offered to lead me to the tiny house. Inside, I discovered that the oldest man in the village really was quite old: he could barely hear, or speak above a whisper. Even so, I went ahead and tried to interview this Mzee (Mama and Mzee are both used to address elders). I pulled out a wrinkled consent form, an audio recorder, my notebook, and started speaking.
Since he couldn’t hear my questions, the Mzee’s first answers were entirely off topic and nearly unintelligible because they were delivered in a raspy whisper. Finally, in frustration, Mama Nzito began answering the questions I was directing at the old man. When I asked whether he had ever participated in medical research, Mama Nzito provided the response. In the 1960s, white “experts” (wataalum) came to her primary school, located in a village just down the road from where we were talking. After meeting with the headmaster and gaining his approval, these men gave the students “medicine” (dawa) in the form of injections and pills to “treat” (kutibu) their bilharzia.1 As Mama Nzito understood it, these medicines were just a cover; the researchers weren’t