The Experiment Must Continue. Melissa Graboyes
starting work, the EAMS had failed to accomplish either of its two publicly stated goals. Researchers were not able to create a broad and adequate base of scientific data, nor had the massive collection of data led to scientifically informed conclusions that shaped policymaking in East Africa. Despite tens of thousands of samples analyzed, reams of medical forms filled out, thousands of hours of interviews, and work in six different locations, the survey could not say anything new about disease or health in East Africa. Or, as one critic put it, the information gathered by the survey “should be of the greatest practical value to the East African governments” and “could lead to the development of measures to solve East African health, social and economic problems.”10 But the truth was that the shoulds and the coulds had not been fully realized.
. . .
The EAMS was the first large-scale example of organized medical research across the region, but it was not the first or last case of human experimentation. Since Europeans arrived in East Africa in the mid-1800s, Africans have been exposed to Western medicine and biomedical research practices. East Africans were the human material necessary for research projects focused on malaria, trypanosomiasis (sleeping sickness), leprosy, onchocerciasis (river blindness), schistosomiasis (bilharzia), and lymphatic filariasis (elephantiasis)—just to name a few of the tropical diseases that captured colonial imaginations. This sometimes meant taking pills or being injected with experimental drugs, but more frequently it meant providing blood, urine, stool, or skin samples, or being examined, measured, poked, and probed. Sometimes research practices were as invasive as a lumbar puncture, and other times as seemingly innocuous as having the interior of your home sprayed with insecticide.
Africa has long served as a source of scientific knowledge—what Helen Tilley has referred to as a “living laboratory” and “natural laboratory,” echoing the sentiments of colonial-era researchers in fields as diverse as ecology, forestry, and tropical diseases.11 The impression of Africa as source of data and fertile testing ground is accurate in many ways. Over the years, discoveries have been made in the East African region with global repercussions, such as those pertaining to Kaposi’s sarcoma and the nature of drug resistance with antiretroviral drugs.12 A particular focus of medical research over the past century was malaria, and Kenya, Tanzania, and Uganda have been the home of multiple elimination attempts, indoor residual spraying experiments, and countless drug trials, including currently ongoing malaria vaccine trials. The postwar global attempt at malaria eradication also led to more unusual approaches, such as a 1961 experiment in the northern Tanganyikan town of Mto wa Mbu, where all of the town’s salt was treated with the malaria prophylaxis, chloroquine. The project was “extremely popular” locally, and effective at reducing malaria rates. When the World Health Organization (WHO) abruptly stopped funding it in 1966, local residents were dismayed, but raised money to purchase the chemically treated salt themselves. The project ultimately faltered in 1972, and malaria rates returned to pre-experiment levels.13
Not all attention was focused solely on diseases endemic to East Africa. Tuberculosis (TB) was of global importance throughout the colonial era, and East Africa was one of many sites of TB research. In 1952, the UK Medical Research Council (MRC) ran a project inside the infectious disease hospital in Mombasa, where Kenyans sick with TB were given either the established treatment or an experimental one. In a published article the researchers wrote that the sixty-six patients involved were “unaware that they were receiving different treatments.”14 The MRC continued its TB research into the 1960s, basing experiments at hospitals and blurring the lines between treatment and research. One Kikuyu man, infected with TB, who was treated at the Infectious Disease Hospital in Nairobi in 1961, wrote to the Director of Medical Services in Kenya to complain that the hospital nurse never specified “whether it was trial treatment or ordinary” that he was receiving. Having found out that he had been enrolled in an experiment, he asked “whether a patient is to be forced to accept a trial treatment or to be requested to do so?”15
What do we make of these examples? They show the broad range of activities that qualify as human experimentation, but they also hint at the diversity and complexity of ethical dilemmas that mark medical research. Ethics refers to a whole branch of philosophy that addresses notions of morality and right and wrong, and medical ethics may bear on any number of diverse topics, including abortion, euthanasia, the distribution of scarce resources, and human experimentation. Research ethics have been defined as being “about ways to ensure that vulnerable people are protected from exploitation and other forms of harm.”16 Another, slightly broader definition is “how research scientists ought to behave towards their research subjects. Ethical rules govern the proper, moral, and desirable conduct of an individual or a profession; they have prescriptive, explicative, protective, and creative functions.”17 Sometimes the ethical questions arising from these situations are obvious—as with the enrollment of a subject in a TB drug trial without his knowledge or consent. Other times, they are less clear—such as what happens when an international agency like the WHO decides to withdraw funding, or when community members believe an activity is done as a permanent public health intervention rather than as a short-term experiment.
There are many examples of researchers and participants engaging with these types of questions and coming to nuanced ethical stances, while drawing upon language that sounds strikingly modern in the framing of individual rights, autonomy, and respect. As just one example, in 1907, a doctor in the Belgian Congo inquired as to whether Africans infected with sleeping sickness could be forcibly treated with the drug atoxyl, which contained high levels of arsenic and often led to blindness. The response stated that the use of such a medication “would be inhumane and its administration to unwilling victims would be contrary to elementary principles of ‘natural law.’” If blindness was a possible result, “it could be used only with the consent of the victim, who would have to be forewarned of its danger.”18 The response takes account of many of the issues modern medical ethics would ask about such a high-risk treatment: accurate information must be shared about the potential dangers, and informed consent must be gained. Individual researchers could show a great degree of sensitivity toward the ethical dilemmas they faced while trying to carry out their work.
These cases of sensitivity are not as rare as one might think. Mixed in the archival record are bits and pieces of surprising, even jarring information regarding African subjects and European researchers not behaving as expected, unlikely alliances being created, power relations being inverted, practices being contested, and new norms and everyday ethics being created and remade in a sometimes collaborative, sometimes conflict-ridden process of give and take. Why did African chiefs use coercive methods to enroll their subjects in colonial medical research schemes? Why did some colonial researchers risk their careers to make arguments to their superiors about minimizing risk and increasing benefit to African participants? Who would guess that European medical doctors in the repressive Belgian Congo would engage in a thoughtful ethical analysis of whether a dangerous therapy could be forcibly given to Africans? How did patients at the Itesio Leprosarium in Kenya make a very modern-sounding appeal for better, more effective treatment, writing, “we are also has the rights . . . the right of human being are only one as the others [sic]”—invoking the now ubiquitous language of human rights?19 Why did a European researcher try to criminalize the dissent of an African community nearly fifteen years after the creation of the Nuremberg Code? How was it possible that East Africans exerted so much control in these medical encounters, especially given the very real power inequities between colonial researchers and subject? From the earliest accounts, researchers were often alarmed by how the behaviors of supposedly passive subjects forced them to modify or cancel projects. There can be no doubt that East African “subjects” are a big part of this history of medical research, and not merely as pathological museums to be observed, or as the human bodies where exotic diseases are to be found.
Arguments
This book provides detailed, localized information about how medical research actually took place: how researchers behaved when arriving in communities, recruiting participants, managing risk and offering benefits, and, ultimately, concluding their experiments and leaving. It also asks how East African communities and participants made sense of these encounters. It lends historical depth to modern questions of medical