C. Tuskegee Syphilis Study and Distrust: Root Causes In Context
As Professor Vernelia Randall explains, “fear and distrust of the health care system is a natural and logical response to the history of experimentation and abuse. The fear and distrust shape our lives and, consequently, our perspectives.” It is critical to examine the root causes for the existence of distrust amongst African Americans and the public *179 health care system. The Tuskegee Syphilis Study is oftentimes the most cited reason for such distrust. Although the Tuskegee Syphilis Study is framed as the longest government initiated ethical abuse meted against Blacks, one cannot overlook the legacy of U.S. Slavery and the legal fiction of chattel property that allowed people of African descent to be bought, sold, and used for medical experimentation. Within the historical context, the Tuskegee Syphilis Study is one incidence that perhaps further solidified the level of distrust amongst Blacks and the healthcare system, but certainly it is not the sole reason. It is perhaps the depth of the misleading nature of a government sanctioned medical experiment during modern times that is most bothersome to some. Faden and Beauchamp note as amongst the egregious facts regarding the Tuskegee Syphilis Study:
These subjects knew neither the name nor the nature of their disease. That they were participants in a non-therapeutic experiment also went undisclosed. They were informed only that they were receiving free treatment for “bad blood,” a term local blacks associated with a host of unrelated ailments, but which the white physicians allegedly assumed was a local euphemism for syphilis. No attempt was made to explain what “bad blood” meant, presumably because the physicians believed that the subjects were incapable of comprehending any complex explanation. The investigators assumed that the subjects would comply without question; their deference to authority and desire to receive medical attention made them *180 readily available subjects. The subjects were also misinformed that research procedures such as painful spinal taps were a “special free treatment,” a patently false statement. As historians James Jones and David Rothman have both argued, theirs was a “manipulated consent”, extracted from subjects in such “social deprivation” that manipulation came effortlessly.
This type of callousness and disregard for humanity engenders a well-founded predisposition within the African American community to distrust public health initiatives, which should be emphasized when teaching the Tuskegee Syphilis Study. The recognition of a present day shadow of distrust that lingers over the healthcare system and its interactions with people of color generally, and Black people specifically, arguably served as an impetus to campaign for a Presidential Apology for the Tuskegee Syphilis Study. President William Clinton stated in the presence of surviving participants and their families:
No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.
The 1997 Presidential apology was significant, but ultimately insufficient to quiet Black distrust of the healthcare system and the inclination to link the Tuskegee Syphilis Study as support for reluctance to participate in clinical research trials, such as HIV/AIDS prevention and treatment *181 programs. Gamble notes that “[t]he syphilis study has also been used to explain why many African Americans oppose needle exchange programs.” The reasons for the present day distrust are no less valid in the collective memory of Black people than any opposing views of its absurdity. However, a critical examination of the historical relationship between Blacks and the health care system reveals that the Tuskegee Syphilis Study must be viewed within a broader historical and social context. Moreover, utilizing a reproductive justice lens enhances the understanding of the general attitudes about medical research held by African Americans, as well as a means to address them.
