Books

A Remembrance of People Lost: Between Epidemiology and History

Back in 2003, before I set out to become a historian of medicine, I tracked media coverage of infectious diseases for the CDC’s Center for HIV, STDs, and TB. The TB part of the title, I was told, was a relict of the past and therefore not likely to appear in the news. By the time I had finished my PhD, a decade later, TB was back, and with a vengeance. But had it ever gone away? And what role had epidemiology played in turning an ostensibly curable disease into a drug resistant menace?

Christian W. McMillen’s Discovering Tuberculosis: A Global History, 1900 to the Present takes on the ambitious task of providing answers. Among the most persuasive is his depiction of how dreams of total epidemiological knowledge have repeatedly been undermined by local realities. This is perhaps most evident in Chapter 9, “The Lost Promise of Antibiotics.” To treat TB effectively, antibiotics needed to be taken consistently. However, as medical anthropologists like Paul Farmer have made clear, powerful social and structural impediments to achieving “compliance” often undermine that goal. [i] Those impediments, though serious, have never been insurmountable. But the first step to overcoming them requires accepting that they exist.

For reasons that are not unconnected to why people were unable to take antibiotics regularly, McMillen shows that epidemiologists found it easier to keep track of patients who completed treatment than those who began — but did not finish — a course of antibiotics. “Lost” patients were, and remain, vulnerable to relapsing with forms of infection that defy treatment. The absence of knowledge about the health status, and even the whereabouts, of these individuals, of which there were many, distorted the epidemiological portrait of TB. Because they were difficult to track, they were effectively ignored.

McMillen emphasizes that surveys of TB control efforts “did not intentionally mislead” (154). Yet, even as epidemiologists acknowledged that they could not account for lost populations of patients, their reports masked an emergent public health crisis by emphasizing only the data that they possessed. Epidemiological surveys, for instance, might focus only on control efforts in specific areas, omitting reports on acquired resistance and patients who did not return for treatment. At a clinic in Ghana the files of anyone who had not returned for two years were discarded. Technical reports produced by the World Health Organization extrapolated only from the data about patients who had not been lost.

Discovering Tuberculosis, then, can be read as a story of the dangers of confusing partial knowledge for total knowledge. This is an apt insight for a historian. “The problem of not knowing what was left out” (154), or what Donald Rumsfeld notoriously called “unknown unknowns,” is ethical, epistemological, and in this book, epidemiological. Yet, as any good historian knows, it is crucial to be aware of why the archive contains what it does and to take seriously the traces that point to what it does not. It is also crucial to understand the limitations of what any individual or institution, even when armed with the best available techniques, can know. This is what feminists have referred to as “situated knowledge” — which embraces partiality in the service of a more refined and effective form of objectivity.[ii]

In the realm of TB control, a study is ultimately only as good as its ability to provide information that leads to the curtailment of infection. This is the tension at the core of McMillen’s history: the ever-widening chasm between biomedical knowledge making (predicated on idealized population laboratories and fantasies of panoptic surveillance) and the need for public health action (complicated by messy social and biological realities). Epidemiology, then, like history, may well be most effective when it reckons with the limitations of its methods.

 

Notes

[i] Paul Farmer, Infections and Inequalities: The Modern Plagues (Berkeley: University of California Press, 1999).

[ii] Donna Jeanne Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” Feminist Studies 14 (1988).

 

Joanna Radin is Assistant Professor in the History of Medicine, of Anthropology and of History, Yale University. Her research examines the social and technical conditions of possibility for the systems of biomedicine and biotechnology that we live with today. She has particular interests in the history of biomedical technology, scientific collections, anthropology, public health, humanism, and research ethics.


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