The Experiment Must Continue. Melissa Graboyes
of an international contract research organization stated dryly, “We don’t see patients, we see data.”5 In fact, the objectification of sick bodies has been a central part of the medical profession. Medicalization of the body (defined as seeing something in medical terms, often unwarrantedly) leads easily into seeing the body as a set of objects, and to a general practice of objectification. The goal isn’t just to separate the idiosyncrasies of individuals from the disease, but to seek objectivity and objective truths. Sick people are not necessarily helpful to science, but they are when they can be turned into data.
It is also worth remembering that the pathological museum was a real place. Many medical schools in Europe had these museums, and they were places where aspiring doctors and researchers—especially those planning on working in the tropics—could see examples of many diseases that would be impossible to otherwise see in their home countries. As with any museum, the pathological museum was a place to view, to gaze at the exhibits. When walking through a pathological museum, there was a one-way viewership: the objects were dead, cut to pieces, and preserved indefinitely; the medical doctor could view the pathology without shame or self-consciousness, could stare as long as he wanted. It’s also worth remembering that specimens were often collected with the goal of sending them back to a pathological museum. In one sense, the sick African really was a walking pathological museum. From the researcher-cum-collector’s point of view, the sick person could easily be reduced to a set of sick parts, each deserving of its own exhibit in a far-off gallery.
The samples for the museum, or the pathologies to be recreated as pieces of data, could not be collected without contact, a human interaction. The scholar of photography Christopher Pinney explains the concept of a “dialogic” period, as the space of time when the subject and photographer come together to create an image.6 While Pinney references the moment in the creation of a photograph, the same concept applies to medical research. It’s useful to think about research, and even a medical survey, as a discrete moment in time, a dialogic period characterized by exchange and interaction. The encounter relies on the participation of both parties; there must be a productive give and take. It is a moment that I refer to as a medical encounter, and which this book works to reconstruct.
Methods, Sources, and the Challenges of Fieldwork
Prior to beginning graduate school, I spent a year working in Tanzania with the public health organization Population Services International. My current interests in this topic were piqued during that time, especially as I traveled through the region and saw the ubiquitous advertisements soliciting volunteers for HIV/AIDS drug trials. These fliers inevitably advertised the study as the “cutting edge” or something similar, and I viewed them with a combination of frustration, disdain, and sadness. A closer reading of the fliers and background knowledge of the process of human subjects research quickly revealed that few of these trials were beyond the very early phases of testing.
Drugs to be sold in the United States must past through three “phases” of human testing in order to be approved by the Food and Drug Administration (FDA). Roughly, the first phase tests the drug—often on healthy volunteers—for serious side effects that could preclude its widespread use. In phase one testing, subjects who are taking no other medicines are especially valued because there is less chance of the experimental drug interacting with other drugs in the body and producing unusual side effects. These research subjects are referred to as “drug naive” and it’s much more likely to find drug naive people in the developing world. Phase two tests whether the new drug is better than nothing, and is conducted on sick subjects. Drugs that have “passed” these first two phases by being mostly nontoxic and an improvement on doing nothing are allowed to progress to the final stage. Phase three involves testing the new drug against the best available treatment for the same condition. When there is reference to people participating in a “therapeutic” drug trial, or talk of someone in an experimental drug trial where they are miraculously cured, it is typically in reference to a phase three trial.7 This is the only phase in which a sick person gets access to a new drug that has a decent chance of being effective, or at least is likely to be better than nothing. (There is also an informal phase four, when the drugs are already on the market but continue to be monitored.)
The drug trial advertisements in East Africa offended my sense of ethical behavior. While I understood the need to recruit people to these studies and the obvious benefits if effective drugs or a vaccine were found, I wondered if these ads were not falsely raising people’s hopes. Most East Africans I spoke with believed these projects were giving out dawa—medicine. Yet I knew that only people participating in phase three trials had a real chance at receiving new, effective medicines. People participating in phase one and two trials were volunteering to test drugs for potentially serious side effects and to see if the new interventions were better than nothing. It was a dubious use of the word dawa.
When I left Tanzania to begin graduate school at Boston University, I knew I was interested in studying the history of human experimentation in East Africa, but I wanted to combine historical training with a better understanding of global public health. After a few years, I had finished my history coursework and exams, earned my Masters in Public Health, and become conversant in Swahili, and I returned to East Africa for a year of research. During those twelve months in the field, and in subsequent summer trips, I conducted forty-three formal interviews, worked in more than a dozen different locations, gathered historical materials from formal and informal archives, and observed medical researchers in a variety of settings. I aimed to be as thorough as possible in researching my topic, occasionally adopting some of the ethnographic and direct-observation techniques of anthropologists. What became most obvious during fieldwork was that it is a difficult activity, full of unexpected challenges and detours.
As I discovered repeatedly, success in the field relied upon plenty of preparation; the work also benefited from a dash of serendipity. My first piece of luck came when I was allowed to participate in the Mosquito Ecology and Control Course in Tanga, Tanzania (run jointly by the Danish Bilharziasis Laboratory and Tanzania’s National Institute for Medical Research, Amani Research Centre). The two-week course gave me newfound appreciation for the work of entomologists, and firsthand experience doing the research that I often read about in historical documents. Our entomological research work involved the physical labor of trekking through thick mud to find mosquito breeding sites and stomping around cesspits, the challenges of convincing homeowners to allow mosquito traps in their homes at night, and the tedious laboratory work of mosquito identification and dissection to establish whether the mosquitoes were malarial. Perhaps just as important, the course introduced me to a set of well-educated East Africans who worked in science and alerted me to the existence of valuable historical materials not in the national archives. They also provided invaluable introductions to colleagues throughout the region.
My time living and researching in East Africa made me much more aware of all the ways doing “good” (or at least accurate) history could be threatened. While in the port city of Mwanza, in the western part of Tanzania, I began reading about the work of the Filariasis Research Unit and its attempt to eliminate filariasis from Ukara Island in Lake Victoria. The documents were plentiful, and detailed a very obvious break in 1959. From 1956 until 1959, residents on the island had willingly participated in drug trials and other research activities. After that date, participation rates dropped off staggeringly. In a matter of a few years, Ukara went from being an ideal testing place to one where researchers loathed working. Through careful reading of the documents, I had figured out the main reason why: the Wakara had been accepting experimental drugs that the researchers had been advertising as “medicine” for over four years, but very few people had been cured. People were tired of receiving ineffective drugs and being lied to, and refused to participate. Since Ukara Island was only about forty miles north of Mwanza, and was reachable by boat, I decided to take a trip to flesh out my understanding.
A few weeks later I was on Ukara Island, speaking with two older men who remembered the filariasis project. When I asked about 1959, and why people suddenly stopped participating, they gave a simple answer: there was a new mtemi (local leader) who was not as excited about the research project as the old leader, and he had not instructed residents to cooperate. Although I asked the two men directly about whether the “medicines” given out by the