This volume is a compilation of essays and excerpts of historical documents related to the Tuskegee syphilis experiments that were conducted under the aegis of the Public Health Service from 1933 through 1972. The title, Tuskegee's Truths, is an apt one, for the book reveals many truths about the highly flawed and, for some, morally reprehensible study that subjected some 400 African-American men to scientific scrutiny without their knowledge and, some argue, without adequate treatment.
The book's editor, Susan M. Reverby, who is professor of women's studies at Wellesley College and the author of an award-winning book on American nursing (
1), is well versed in the historically based ethical issues that have confronted the health professions. Professor Reverby makes her own position on the Tuskegee experiments quite clear from the outset. For her, it represents a stark example of "racism, medical arrogance, and state power" within a context of oppressive "class, sexuality, and gender [discrimination] in a racialized medical setting." This assessment is largely a recapitulation of James H. Jones' argument in his now classic exposé on the subject,
Bad Blood (
2).
But Tuskegee's Truths is not merely a 630-page harmonious chorus of collective moral outrage and indignation. Although Reverby admits, "I was often torn by my desire to criticize many of the viewpoints provided, to counter arguments made, to register my repugnance or deep disagreement with positions held," she is to be commended for not yielding to the temptation and remaining loyal to her charge—editing and not editorializing.
What emerges is a kaleidoscope of opinion that demonstrates what the Tuskegee syphilis study ultimately amounts to: a complex case study of medical ethics. While many of the contributors echo Reverby's sentiments, the volume contains voices of dissent worth noting. For example, Thomas Benedek, in "The 'Tuskegee Study' of Syphilis: Analysis of Moral Versus Methodologic Aspects," attacks these experiments for poor scientific methods but exonerates them morally and ethically. "The righteousness of the ethical critics," he writes, "fails to take into account that in the context of the 1930s thoughtful physicians could detect no ethical dilemma in an investigation such as the Tuskegee Study, and also refuses to accept the evidence that very little would have been accomplished therapeutically by initiating penicillin treatment in the 1950s."
Benedek's assessment becomes clearer when placed alongside the excerpted contemporaneous documents of the Tuskegee study. Although Reverby is aghast at the "assumptions, beliefs, and convoluted reasoning of those involved in the creation and perpetuation of the study," these were the factors that animated every aspect of this protracted effort to understand the nature and effects of a disease that had reached epidemic proportions among the black population of rural Alabama. Furthermore, the precise nature of untreated syphilis was not clearly understood in the early 1930s, and indeed some suggestion that syphilis was a self-limited disease remained a matter of discussion. Thomas Parran, U.S. Surgeon General and author an influential book on syphilis (
3), made reference (
4) to "a partial immunity . . . as the result of infection. Variations in this immunity may be responsible for variations in the results of treatment. Here again new knowledge is sorely needed."
What were the effects of leaving syphilis untreated? Data available at the study's inception suggested that the majority of untreated cases might resolve spontaneously; the Tuskegee study was designed in part to answer that question. As Benedek and Erlen (
5) have pointed out, "Since the Norwegian retrospective study seems to show that syphilis frequently is a self-limited disease, at least in a Scandinavian population, and no abrupt benefit could be expected from the available treatments, the most direct way to evaluate future therapy was against a documented prospectively gathered baseline of the untreated course of the disease. The question of whether the Norwegian findings were applicable to the predominant American syphilitic population which had an African ancestry would best be clarified by performing such a study on a black syphilitic population."
It is in this context that one can understand, at least in some measure, the view of those who developed the Tuskegee experiment. For Surgeon General H. S. Cumming, the "unusually high prevalence" of the disease in Macon County, coupled with the fact that "99 per cent of this population group was without previous treatment" afforded "an unparalleled opportunity for carrying on this piece of scientific research which probably cannot be duplicated anywhere else in the world." Although contemporary analysts have suggested that the participants should have at the very least been informed of the nature of the study they were to participate in, and although we cringe today at so callous an approach to human experimentation, notions of this kind were largely foreign to the medical community at least until the late 1950s and early 1960s.
John C. Fletcher's essay, "A Case Study in Historical Relativism," presents a slight modification to Benedek's appraisal. Fletcher refuses to lay ethical blame on the study in its early years—insisting that efforts to do so are unsupportable and presentist—but he issues what he calls "a graded approach to moral judgment" whereby the study became progressively culpable for violating "the [standards of] protection owed by society and physician-investigators to human subjects of research" as these concepts became more clearly defined, especially after 1965. The admission made by Dr. Clyde Kaiser to the 1969 Ad Hoc Committee to Consider the Tuskegee Study is revealing: "This is not a study that would be repeated now. The public conscience would not accept it."
These points are raised to demonstrate one of the incontrovertible facts about the Tuskegee syphilis study: the extended nature of this longitudinal study introduces the complicating factor of historical context through the evolving normative standards and expectations of ethical responsibility of the period. As such, the Tuskegee syphilis study represents an excellent if complicated opportunity to do much more than issue high-toned platitudes about the responsibilities that researchers have to their subjects. It is an opportunity to engage in a meaningful public discourse about the importance of ethical concerns in human experimentation and the moral obligation to continue to refine concepts of informed consent, sharpen the appropriate treatment protocols for groups under study, and carefully and clearly establish the parameters of responsibility to initiate treatment to control groups. After all, we too are captives of our own times and attitudes.
The variety of opinions expressed and of approaches offered—including the excellent selection of primary material—make this book tremendously valuable for those interested in the complex issues connected with human experimentation. Tuskegee's Truths will make excellent supplemental reading for researchers, physicians, faculty, medical students, and others interested in medical ethics.