Susan Reverby

The basic argument of the book is that the Tuskegee study of men with untreated syphilis was a lot more complicated than the dominant narrative says. Though founded on racist assumptions that structured the science and on lies to the subjects—called “patients”—the study did not prevent many of the subjects from getting at least partial treatment for their syphilis (a fact that, not incidentally, further interfered with the study’s ability to draw useful conclusions). The subjects were not helpless—many moved away, sought other doctors’ treatment (and sometimes the doctors or the crucial nurse in the study told them to do so), and resisted attempts to draw their blood. But that just emphasizes the role of the initial deception: they participated because they thought they were being treated, and the doctors were perfectly willing to let them think that even when they weren’t actively speaking misleadingly about “treatment” (aspirin and iron tonics were provided, which treated some problems, but not syphilis).

At the same time, there was substantial scientific uncertainty about how or even whether to treat latent syphilis; when penicillin arrived on the scene, some argued that—because of the risks of allergy or a well-known reaction in which dying syphilis spirochetes released toxins into sufferers’ bodies—penicillin was inappropriate for people with long-latent syphilis. So the decision not to treat participants with penicillin has a justification not simply founded in racist disregard. Except that, given when they were infected, not all the subjects met even that criterion for exclusion from penicillin treatment. There were also risks to their partners and their children from failing to treat. The study was therefore a complicated mix of race-based and resource-based assumptions that structured the scientific questions asked, allowed doctors to conclude that these people could be “asked”—that is, told—to sacrifice in the service of the greater good, and enabled them to persist over time.

There was also a classic resource question: there wasn’t enough money to treat syphilis to the general standard of care when the study started or as it continued. If the patients wouldn’t be getting (full) treatment anyway, many reasoned, this was overall beneficial, or at least not harmful. Similar questions keep arising, and the book points out that Tuskegee was the point of comparison when doctors argued that treating some HIV-infected Ugandan women with a short course of AZT and comparing the results for their children to placebo was justified because the standard long course was entirely out of reach. If you can’t solve the resource inequity, but you can (maybe) help some people, what should you do? Some people argued that objections from Western bioethicists constituted “ethical imperialism.” Still, and the book sometimes doesn’t spend enough time on this, putting it that way to the subjects themselves and letting them decide is not the same thing as telling them they’re being treated.

One way to read the book is as a recontextualization—the study was not a horrific act carried out by racists incredibly distant from our own enlightened concerns, but a series of choices made under recognizable constraints, including racist assumptions. As I was reading, I sometimes got the feeling that the author thought that “not horrific” was the same thing as “not that far out of the mainstream,” but at the end I’m inclined to attribute that view more to people involved with carrying the study out who tried to defend against the dominant narrative that what happened at Tuskegee was racism of the genocidal variety. “The Study happened, in part, because racism left a population under-educated, ill, and in need of any help it could get, while at the same time doctors and researchers could use clinical certainty about race—both behavioral and psychological—to explain these conditions, even when contradictory data on purported racial differences and alternative explanations to prevalence rates existed. Statistical manipulations and questionable research in the Study, even in an area when clinical trials were badly organized, protected racialized assumptions about disease.” Still, it’s hard to escape the conclusion that the author looks down on the use of “Tuskegee” as a shorthand for racist use of science in political discourse. Complicated doesn’t mean not racist.… (meer)