The Experiment Must Continue. Melissa Graboyes

Чтение книги онлайн.

СКАЧАТЬ was the brainchild of Professor MacSweeny at London University and Professor George Macdonald from the Ross Institute at the London School of Hygiene and Tropical Medicine. The EAMS commenced in 1949, and, as was true of so many of the research institutes and individual projects in the region, the goals of the EAMS were never entirely clear, although they grew narrower during the organization’s six years of work.³ In 1949, the EAMS was described as having two distinct phases: first, that of “mapping of disease,” and, second, an attempt at “selective elimination of disease.”⁴ By 1951, plans to eliminate disease had disappeared, and the organization shifted entirely to describing local conditions: to get “a complete picture of what actually is medically wrong with the African.”⁵

      Six locations across Tanganyika and Kenya were selected for in-depth surveying of thousands of East Africans. In each place, a team of researchers would descend to collect samples of stool, urine, blood, and skin to test for diseases such as anemia, worms, river blindness, malaria, and bilharzia. The medical researcher Hope Trant, who worked for the EAMS, was being both cynical and accurate when she called herself a “collector of specimens.”⁶ The number of Africans involved in each place varied between 2,000 and 6,000, and the science to support the “right” number of samples was not at all clear. In addition to the residents who were medically examined, all women were required to give maternity histories, and thousands of other people participated in community-wide agricultural, veterinary, dietary, or tuberculosis surveys.⁷ In Tanganyika, research was conducted on Ukara Island in Lake Victoria, Bukoba along the shores of Lake Victoria, Kasulu and Kibondo districts in western Tanganyika, and Kwimba in Sukumaland. In Kenya, surveys were completed in the western region in Kisii and along the coast in Msambweni. There were hopes to conduct a survey in Uganda, but because of problems securing help from the Uganda Medical Department, no research was done there.⁸ While those in charge claimed the sites were “representative” of East Africa, it seems many places were selected with an eye toward practical matters such as ease of access, existing infrastructure, and the presence of helpful local leaders. Nothing indicates these locations were representative in any meaningful way, or that conclusions relevant to these places could be convincingly extrapolated to the wider region.

      MAP 1.1. East African towns and main research stations. Map by Chris Becker.

      When the EAMS began, it was lauded as something novel. An annual report boasted “that never before had such investigations been planned on so broad and adequate a base.” After five years of work, the fate of this never before attempted scientific inquiry was plain. The administrators of the project conceded, “experience has since shown that the base was neither broad nor adequate.”⁹ By 1955, seven years after officially 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 СКАЧАТЬ