Reviewed Book
The Experiment Must Continue: Medical Research and Ethics in East Africa, 1940-2014. Melissa Graboyes, Athens: Ohio University Press, 2015, 307 pp.
The Experiment Must Continue is a historical study of medical research projects in East Africa, examining the ethics of medical trials conducted by foreign scientists. The book focuses especially on research in the late colonial period, examining an interrelated set of medical experiments in the 1950s and 1960s, but also expands its comparative scope to consider parallel experiences from the more recent past. It is based on archival work in Kenya, Tanzania, and the United Kingdom, as well as Swahili-language oral history interviews. With its grounded and spirited engagement with the practical ethics of research science, this book is a welcome contribution to the literature on the history and ethics of medical research.
The book is organized as an examination of different temporal moments in the medical encounter. After an introductory chapter, a chapter on rumors and accusations attempts to characterize East African understandings of medical research. Ensuing chapters analyze arrivals of researchers and their acceptance (or not) by potential study subjects, the role of consent, the balancing of risks and benefits, and finally the conclusion of medical studies and the exit of researchers.
The unique structure of the book allows for uniquely clear comparisons. The four substantive historical chapters are each prefaced with a historical narrative and a modern narrative that concisely tell the stories of clinical trials that exemplify particular ethical questions. Sometimes the modern examples strike a blow for the idea of progress: Graboyes juxtaposes a colonial-era research project that went down in literal flames among rumors of bloodsucking with a recent male circumcision experiment that she proposes as the model of a well-designed trial.
In other examples, colonial antecedents get the better of recent global health researchers: Graboyes compares a 1950s debate about the ongoing obligation of malaria researchers to deal with the consequences of experiment-induced loss of acquired malaria resistance to the apparent lack of concern about similar issues in recent malaria vaccine trials.
The overarching argument is that while East Africans and foreign researchers perceived the nature of research very differently, both often understood it as an exchange through which disagreements and conflicts occurred over acceptable risks and benefits. Far from passive research objects, East Africans had the ability to negotiate or halt medical trials. The real contribution, however, comes from Graboyes’s good faith practical engagement with questions of ethics in medical research. She never allows the analysis to rest in the easy moral high ground of damning critique. Graboyes’s rigorous comparative approach means that she identifies both ethical lapses and best practices; the book identifies research projects that were based on earnest efforts to communicate openly with participants, to prioritize the reduction of risk, and to offer immediate and tangible benefits to participant communities. This brings the reader into the work of actually assessing what ethical research should look like.
The Experiment Must Continue offers a series of pointed arguments folded within rigorous comparative studies. It asks why some researchers were rejected by potential participant communities while other research projects were allowed to continue; how some projects failed to meet the requirements of consent while others innovated model best practices; and why individuals researchers thought so differently about acceptable risks and appropriate benefits.
The resulting conclusions are argumentative and consequential, as Graboyes makes a number of contributions to the literature on practical medical ethics: Researchers should seek to understand how participant communities understand the risks of medical research, not just attempt to educate them from a position of presumed superiority; researchers should not pretend they are the sole ethical decision makers as East Africans have demonstrated that they have the ability to reject researchers when they find it appropriate to do so; researchers ought to seek out what participant communities understand appropriate benefits to be, and should offer benefits that accrue directly and immediately to the individual or community; and researchers should be obliged to deal with the consequences of the ending research projects.
Indeed, it is refreshing to see Graboyes use words like “should” and “ought” as the book wades into the practical ethics of medical research. The writing is both clear and compelling. The case studies speak directly to her questions without compromising complexity, and her conclusions make contributions to practical research ethics without sacrificing nuance. This is responsible and meaningful scholarship.
The title of the book illustrates the moral complexity that Graboyes invites the reader to consider. The quote comes from a colonial researcher who refused to accept evidence that a malaria control trial was producing a more dangerous drug- resistant strain of the parasite. The quote therefore seems damning of medical research imperatives that fail to consider the well-being of study participants. However, Graboyes states that the answer to this ethical failing cannot be to stop all research and thereby abandon the most vulnerable. Indeed, even if this particular malaria trial should have been halted, in a grander sense “the experiment must continue.”
This is where the scope of the book becomes relevant. The regional focus and historical scope of the book allow for an examination of particular ethical issues with purpose and in detail. They also mean that, like any book, a number of possible themes are left out. Readers interested in African historical experiences with medical science will not find textured descriptions of indigenous perspectives on health or the history of the medical professions in East Africa. If a lesson of this book is that there is a moral obligation to conduct ethical research in Africa, then the focus on the encounter between foreign scientists and their African employees, on the one hand, and largely rural East African populations, on the other, risks excluding African medical professionals from the project of global health. This may give foreign researchers the sense that the obligation to do research falls only to them and that the task of collaboration relates primarily to trial subjects and not also their African colleagues. Those may be concerns for a different book. This book makes a significant contribution to important questions about how to do medical research.
The Experiment Must Continue gives earnest suggestions for real ethical issues facing researchers based on careful and reflexive historical research. It is recommended for anthropologists interested in medical ethics, the ethics of research more broadly, or historical precedents to the contemporary global health paradigm. It will also be of interest to historians and anthropologists of medicine in Africa. The book addresses audiences across the social sciences and medicine, and medical researchers themselves should find the writing accessible, engaging, and relevant to debates in their fields. Its clear thematic organization means that it could be usefully assigned in advanced undergraduate courses as well as graduate seminars.