REYES: Effects of Tuskegee Study still felt today
Opinions Column: Free as in Libre
Doctors are seen as trustworthy individuals who dedicate their careers to their communities and larger public service, yet, for marginalized people, especially black Americans, the medical community elicits fear and mistrust due to a record of discriminatory practices in diagnosis and treatment. While awareness of the ways in which doctors discriminate against patients of color is growing, the most infamous case of medical racism, the Tuskegee Study of Untreated Syphilis in the Negro Male, remains largely unknown by the populace. It is crucial that we recognize ways and instances in which “trusted” public institutions actively engage in racism so that we can build institutions that truly serve us all. Our public health system and scientific institutions are not exceptions to participating in institutional and systemic racism, and the Tuskegee Study is a testament to this legacy.
In 1932, the U.S. Public Health Service (PHS) recruited 600 black, mostly low-income men in Macon County, Alabama for a clinical trial providing special treatment for “bad blood.” While none of the men knew what illness they were specifically being treated for, they had the promise of free meals, free physicals and free burial insurance. What PHS researchers were truly studying was the progression of the venereal disease syphilis — without providing treatment. The researchers never obtained consent from the men who participated, letting those affected go through the devastating effects of the disease. Because researchers never informed the men in the study of their health status, many of their wives and children also contracted the disease.
All this occurred four years after the discovery of penicillin, which was widely accepted as the treatment for syphilis in 1945. That year, PHS started administering penicillin in rapid treatment centers to help people afflicted with syphilis but never administered treatment to the men in the Tuskegee Study. While even one day would have been too long, the fact that the study was originally intended to last six months but continued for 40 years, demonstrates the utter lack of concern by a multitude of public health administrators through the decades. It was not until 1966 when Peter Buxtun, a public health investigator and social worker, wrote to the director of the U.S. division of venereal diseases on his concerns about the ethics of the Tuskegee Study. After he was ignored by agency staff, Buxtun leaked information about the study to Jean Heller, an Associated Press reporter who ultimately revealed the truth of this horrific experiment in a July 1972 front-page feature of The New York Times, effectively ending the study and beginning years of litigation and reparations for those impacted.
While maintaining trust in the profession is vital to diverse participation in biomedical research and improving health outcomes, the Tuskegee Study impaired this goal. In a recent economic study, researchers concluded that the “disclosure of the Tuskegee Study in 1972 is associated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men.” What this means is that even older black men, particularly those with the lowest education and income levels, who did not participate in the study were also negatively impacted. The heightened mistrust of medical professionals ultimately led to worse health outcomes and a life expectancy reduced by 1.5 years which accounted for 35 percent of the 1980 life expectancy gap between black and white men.
A critical component in addressing these injustices was the passage of the National Research Act of 1974, which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. This commission developed basic ethical principles and required Institutional Review Boards ensure standards are being met to protect human subjects in research from unnecessary risks and ramifications due to abuses like those seen in the Tuskegee Study. Unfortunately, recent reports of pharmaceutical companies taking advantage of mentally ill and homeless people in clinical trials demonstrate how our patchwork, profit-driven health system continues to marginalize our most vulnerable with no regard to ethical standards and the humanity of those affected.
The human rights violations committed by PHS researchers in the Tuskegee Study highlight how science is not an inherently value-free institution and that in the pursuit of “objective scientific progress,” vulnerable people were exploited, abused and allowed to die. How can we hold scientific and medical institutions accountable to a bioethical standard, under a system that continues to put profit over people’s lives? This implores us to be critical of supposedly value-free institutions and push back with ethical solutions built from the ground up. Our communities have the agency needed to guarantee medical abuses like those carried out in the Tuskegee Study do not continue to happen — now it’s time to organize.
Thalya Reyes is an Edward J. Bloustein School of Public Policy master's candidate for public policy and city and regional planning. Her column, "Free as in Libre," runs on alternate Tuesdays.
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