From 1932 until its exposure in 1972, the U.S. Public Health Service (PHS) ran "The Tuskegee Study of Untreated Syphilis in the Negro Male". Originally, it was supposed to last six months. It went on for forty years. 600 Black American men (399 men with "bad blood", i.e., latent syphilis and 201 free of the disease for the control group) were recruited in Alabama to study the progression of syphilis including recording the progress of disease until its final stage, autopsy.
The men - poor sharecroppers who took part without informed consent - were given placebos, e.g. aspirin and mineral supplements, although penicilin was introduced in 1947 becoming the recommended treatment (via). While withholding available treatment and not disclosing the diagnoses, the PHS told them that they were receiving free therapies for "bad blood". Obviously, “the men’s status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people.” (via). There were fliers out offering free health care and free burial:
It offered the men free health care, annual checkups, certificates of appreciation and free burial. They did not tell them that they had syphilis. And one man who found out what he had drove over to Montgomery to a clinic to get treated. And the doctors had him chased and brought back and warned the clinic that if they ever treated another subject from Tuskegee, they would lose their federal funding. Jean Heller
Things started changing in 1966. Peter Buxtun, who was working as a venereal-disease investigator for the PHS (and later became one of the most important whistleblowers) heard his colleagues talking:
“I’m seated in this dinky coffee room and I hear several colleagues talking about an ill, insane man who was taken by his family to see a doctor outside of Tuskegee, Alabama. The doctor determined the man had syphilis and gave him a shot of penicillin. To everyone’s shock, however, the doctor was soon called on the carpet by physicians for the Communicable Disease Center (known today as the Centers for Disease Control) and reprimanded. They said he had ‘ruined their study’ and ‘jogged their statistics.’”
Over the following years, Buxtun requested whatever material was available, made investigations, educated himself on the history of unethical research, tried to convince his colleagues, sent his assessment to his superiors and got lectured for doing so. The study continued. In 1972, finally, Edith Lederer, a reporter with the Associated Press, passed Buxtun's story on to her superiors which led to newspaper headlines across the country about the victims going untreated for forty years. Only then did the study stop (via and via). By that time, 28 participants had died from syphilis, 100 from related complications, at least 40 wives had been infected and the disease had been passed to 19 children at birth (via). In 1974, survivors and heirs of those who had died received a ten million dollars out-of-court settlement, in 1993 Bill Clinton officially apologised, in 2004 the last participant passed away.
An arch-conservative and proud Oregon Duck, Buxtun is a lifelong Republican, strong NRA supporter (the owner of several dozen guns), and a collector of medieval weaponry. But regardless of his political persuasion, organizational affiliations, and hobbies, Buxtun learned at an early age to consider the lives of poor, Black sharecroppers beyond what they were thought of by the medical establishment: as autopsy material. He did not need a popular movement or newspaper headlines to tell him what to do. Buxtun saw a wrong perpetrated by powerful forces and spent years trying to right it. Without his courage and perseverance there is no telling how much longer the ethically toxic Tuskegee Syphilis Study would have continued. (via)
The Tuskegee experiment was possible because of a combination of a military approach to medicine and racist ideology:
First, it is important to understand that the Public Health Service was established in the U. S. Surgeon General's office and was operated as a military organization. Amidst the development of an imperial agenda of the U.S. in the late 19th and early 20th centuries, the PHS was responsible for protecting hygiene and the superiority of "the American race" against infectious foreign elements from the borders. The U.S. Army's experience of medical experiments in colonies and abroad was imported back to the country and formed a crucial part of the attitude and philosophy on public health. Secondly, the growing influence of eugenics and racial pathology at the time reinforced discriminative views on minorities. Progressivism was realized in the form of domestic reform and imperial pursuit at the same time. Major medical journals argued that blacks were inclined to have certain defects, especially sexually transmitted diseases like syphilis, because of their prodigal behavior and lack of hygiene. This kind of racial ideas were shared by the PHS officials who were in charge of the Tuskegee Study. Lastly, the PHS officials believed in continuing the experiment regardless of various social changes. They considered that black participants were not only poor but also ignorant of and even unwilling to undergo the treatment. When the exposure of the experiment led to the Senate investigation in 1973, the participating doctors of the PHS maintained that their study offered valuable contribution to the medical research. (Park, 2017)
The Tuskegee study is far from being the only case in which Black people were exploited in the name of medicine but it has become "the" study symbolising this kind of abuse. Today, this experiment is seen as one primary driver of distrust Black communities have in the U.S. health care system. It is also used to show Black Americans why they should not cooperate with medical researchers. Still, the racism that fueled this study had existed for centuries before (via, Northington Gamble, 1993). After the Tuskegee study, the federal government strengthened regulations aiming to protect subjects of human experimentation. Despite the increased safeguards, Black Americans still fear to be abused in the name of medical research, a distrust (e.g. vaccine skepticism today) that is the direct result of "the broader history of race and American medicine". US-American medicine, in fact, supported racist social institutions and laws (Northington Gamble, 1993).
Geriatric psychiatrists are in a critical position to either heal or harm, repair or further damage, older Black Americans’ distrust of our healthcare system. Older Black patients served by geriatric psychiatry remember the painful memory of Tuskegee in their minds and bodies and pass this memory on to their families. Bearing in mind that history is our most ominous caution and our greatest teacher in understanding and hopefully ending today's healthcare injustices, what will geriatric psychiatrists do to transcend the wrongdoings of Tuskegee? (Black, Ramos & Anderson, 2022)
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- Black, C. B., Ramos, M. & Anderson, N. (2022). From "Bad Blood" to "Racial Disparities:" Will Geriatric Psychiatrists Transcend to Wrongdoings of Tuskegee? The American Journal of Geriatric Psychiatry, 30(8), link
- Northington Gamble, V. (1993). A Legacy of Distruct: African Americans and Medical Research. American Journal of Preventive Medicine, 9(6), 35-38.
- Park, J. (2017). Historical Origins of the Tuskegee Experient: The Dilemma of Public Health in the United States. Uisahak, link
- photographs of Tuskegee study subjects via and via and via and via and via
Beyond words.
ReplyDeleteYes... I don't know what to say either.
DeleteThanks, Karen.