American Peter Buxtun, the whistle-blower who revealed that the US Government allowed hundreds of black men in rural Alabama to go untreated for syphilis in what became known as the Tuskegee study, has died, aged 86.
Buxtun, who died on 18 May of Alzheimer’s disease in California, is revered as a hero to public health scholars and ethicists for his role in bringing to light the most notorious medical research scandal in US history, reports Medpage Today.
Documents that Buxtun provided to the Associated Press (AP), and its subsequent investigation and reporting, led to a public outcry that ended the study in 1972.
Forty years earlier, in 1932, federal scientists began studying 400 black men in Tuskegee, Alabama, who were infected with syphilis.
When antibiotics became available in the 1940s that could treat the disease, federal health officials ordered that the drugs be withheld.
The study became an observation of how the disease ravaged the body over time.
In the mid-1960s, Buxtun was a federal public health employee working in San Francisco when he overheard a co-worker talking about the study. The research wasn't exactly a secret – about a dozen medical journal articles about it had been published in the previous 20 years.
But hardly anyone had raised any concerns about how the experiment was being conducted.
“This study was completely accepted by the American medical community” said Ted Pestorius of the US Centres for Disease Control & Prevention (CDC), speaking at a 2022 programme marking the 50th anniversary of the end of the study.
Buxtun had a different reaction. After learning more about the study, he raised ethical concerns in a 1966 letter to officials at the CDC. In 1967, he was summoned to a meeting, where he was chewed out by agency officials for what they deemed to be impertinence.
Repeatedly, agency leaders rejected his complaints and his call for the men in Tuskegee to be treated.
He left the public health service and attended law school, but the study ate at him. In 1972, he provided documents about the research to Edith Lederer, an AP reporter he had met in San Francisco. Lederer passed the documents to AP investigative reporter Jean Heller, telling her colleague, “I think there might be something here.”
Heller’s story was published on 25 July 1972, leading to Congressional hearings, a class-action lawsuit that resulted in a $10m settlement, and the study's termination about four months later.
In 1997, President Bill Clinton formally apologised for the study, calling it “shameful”.
Buxtun was born in Prague in 1937. His father was Jewish, and his family had immigrated to the US in 1939 from Nazi-occupied Czechoslovakia.
In his complaints to federal health officials, he drew comparisons between the Tuskegee study and medical experiments Nazi doctors had conducted on Jews and other prisoners.
Federal scientists didn’t believe they were guilty of the same kind of moral and ethical sins, but after the Tuskegee study was exposed, the government put in place new rules about how it conducts medical research.
Today, the study is often blamed for the unwillingness of some African Americans to participate in medical research.
Buxtun attended the University of Oregon, served in the US Army as a combat medic and psychiatric social worker, and joined the
federal health service in 1965.
Emotional
He went on to write, give presentations, and win awards for his involvement in the Tuskegee study, and a long-time friend, Angie Bailie, said she attended many of his presentations on the subject..
“He never ended a single talk without fighting back tears,” she said
Buxtun said he did not anticipate the vitriolic reaction of some health officials when he started questioning the study’s ethics.
At a Johns Hopkins University forum in 2018, he was asked where he got the moral strength to blow the whistle.
“It wasn’t strength,” he said. “It was stupidity.”
See more from MedicalBrief archives:
Records from notorious US Tuskegee syphilis study now online
New York fund apologises for role in 40-year Tuskegee syphilis study
WHO circumcision campaigns in Africa ‘systemically racist, unethical and neocolonial’