B. The Human Subjects - Intended and Collateral Consequences
The Tuskegee Syphilis Study and its intended consequences should be contextualized in terms of addressing racism, research, and the U.S. healthcare system. Medical schools typically recount the Tuskegee Syphilis Study, notably the most infamous biomedical study in U.S. history, without acknowledging the direct impact on the women who were not part of the study but nonetheless sustained “collateral consequences.” This omission furthers the existing race, gender, and class disparities in healthcare generally, and specifically the marginalization of women as *161 research subjects. The historically marginalized issues of race, gender, and research in the Tuskegee Syphilis Study must be acknowledged in order to begin to address current health disparities amongst women.
In order to cast light on the historical marginalization of women impacted by the Tuskegee Syphilis Study, the site and human subjects selected for the study must be critically examined. Dr. Taliafero Clark, Chief of the PHS Venereal Disease Division and author of the Rosenwald Study, is identified as the lead advocate in the decision to create the Tuskegee Study of Untreated Syphilis in the Negro Male. Macon County, Alabama, the chosen site for the experiment - a county with an 82 percent population of Blacks, a high incidence rate of syphilis, cooperative local and state officials, community goodwill, and a unique vulnerability to participate in another Rosenwald-type treatment programs, proved to serve as a “live laboratory.” As Dr. Clark reasoned; “[i]f there were no funds to treat the syphilis problem in Macon County, at least a scientific experiment might be a way to learn something from it.” Washington explains that the PHS expected to “validate its belief in a specific racial dimorphism of syphilis . . . it was thought to wreak its worst havoc on the cardiovascular system of Blacks, sparing their relatively primitive and ‘underdeveloped’ brains.”
James H. Jones correctly points out that “[i]t is necessary to place the Tuskegee Study within its historical and institutional context,” and explains how the experiment “fits into the development of the public health movement in the United States.” In order to understand how the Study could have ever occurred and for how long it occurred, one must acknowledge the salience of race and the interaction between race and *162 medicine.
The gender selection for the participants in the Tuskegee Syphilis Study was restricted to males from the very onset, during a meeting initiated by Dr. Clark with members of the “Cooperative Clinical Group, an association of medical researchers composed of the most distinguished syphilologists in the United States.” Jones surmises that the resort to only male participants among the consulting doctors goes to “what every good clinician knows”:
[W]omen often fail to recognize the early symptoms of the disease because their genitals are largely internal and because the early symptoms are frequently mild and can easily be mistaken for unrelated problems involving vaginal itching and burning. By the time more severe symptoms develop and force them to seek medical care, women often learn to their dismay that the disease is well advanced. They also find it hard to pinpoint for their physicians when the early symptoms of the disease appeared, making it difficult to determine when the disease was contracted.
Although the all-white, all-male coalition purportedly made their decision on the basis of biology and irrefutable facts regarding the location of male/female genitalia, it should be noted that the first Rosenwald-type experiment accepted all ages of both sexes and treated as many participants as the demonstration would accept. Therefore, the Tuskegee Syphilis Study's election to use all males should be reexamined in light of a historical representation of “[b]iomedical research [failing] to address the health needs of women” by explicitly excluding all women in the protocol. It is imperative to acknowledge that the Black women of the Macon County, Alabama, both historically and presently, is unique in that Black women were excluded not only on the basis of gender, but also race, and such women have been generalized as part of a distinct race: the “notoriously syphilis soaked race.” Hence, the Black women directly *163 impacted by the effect of untreated syphilis were not deemed “worthy” of study.
The historical omission of the women directly impacted by the Tuskegee Syphilis Study speaks to Dorothy E. Roberts' argument that “because women of color experience the intersection of gender and racial oppression, they may have unique critical insights to offer mainstream feminist theory and practice.” Knowledge of the historical marginalization of Black women in the Tuskegee Syphilis Study would aid future doctors and researchers in their decision-making when faced with the call regarding which sex to study. The critical insight afforded to teaching medical students about the Tuskegee Syphilis Study lies in acknowledging the biomedical significance of overlooking the women directly impacted from the study, both in the past and today. Susan M. Wolf recognizes the Tuskegee Syphilis Study performed by the U.S. Public Health Service on [Blacks] amongst the foundational events contributing to the field of bioethics.” Hence, medical education can no longer afford not to study the Tuskegee Syphilis Study from a reproductive justice framework (discussed in Section III in greater detail), which tells the “her-story” of *164 the women of the Tuskegee Syphilis Study in order to adequately address the current accreditation mandate for cultural competency. Though the doctors did not believe that studying women was important and thus they were intentionally excluded, the women's experiences were indeed significant.
It should be noted that “[the] preoccupation with personal responsibility for disease assured syphilis a prominent place in the medical discussion of [B]lack health.” The truth of the matter is that the microbe causing syphilis had been discovered by German researchers in 1905, and a therapy for treating the disease was later discovered in 1910. Late nineteenth century physicians earnestly believed that they were on the eve of a discovery. Nonetheless, the longest standing experiment with human subjects in medical history was executed in Macon County, Alabama to study the effect of untreated syphilis on negro males. A brief overview of the disease, which was not being treated, follows:
The disease is caused by a type of bacterial organism named Spirochaeta pallida, or, more specifically, Treponema pallidum, a spirochete. Spirochetes are named for their spiral shape: Under a microscope, the wormlike bacteria wiggle furiously. T. pallidum can be acquired through sexual activity or congenitally, from an infected mother. In the initial stage of sexually transmitted syphilis, a chancre, or hard, painless sore, appears on the genitals or other point of entry, followed by flulike symptoms. If the disease is not treated, it enters a long latent secondary stage before emerging to *165 inflict an assortment of skin growths, running sores, gumma, bone decay, and heart damage. The final, tertiary, stage of syphilis may erupt several decades later, causing profound neurological damage- blindness, insanity (paresis), paralysis, and death.
This article calls for a critical examination of the devastation caused by the Tuskegee Syphilis Study to both males and females.
