John Mitchinson explores the lasting impact of a controversial American study steeped in the institutional racism which continues to permeate the country today
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One 50th anniversary that passed most of us by last November was that of the ending of the Tuskegee Study of Untreated Syphilis in the Negro Male, often referred to as the ‘Tuskegee Experiment’.
Launched in 1932 as an attempt to observe the effects of syphilis when left untreated over an extended period, it is now regarded as one of the worst violations of medical ethics in US history.
A US Public Health Service team travelled to Macon County, Alabama and recruited 600 male African American sharecroppers – 399 of whom showed symptoms of latent syphilis, and a control group of 201 who didn’t.
They were recruited under false pretences, being promised treatment for a condition known as ‘bad blood’, a popular term for a collection of conditions raging from anaemia and fatigue to syphilis and a leading cause of death in the rural south.
At no point were any of the men given their diagnoses or warned of the dangers of leaving their condition untreated. These include bone and dental deformation, deafness, blindness, heart disease and deterioration of the central nervous system.
By the time it ended in 1972, only 74 of the men were still alive. Of the 399 men who had originally shown symptoms of latent syphilis, 28 had died of the disease, another 100 died of related complications, 40 of their wives had been infected, and 19 of their children were born with congenital syphilis.
No treatment was ever offered, despite penicillin having been identified as a safe and effective treatment for syphilis in 1943.
The scandal was uncovered by Peter Barzun, a PHS venereal-disease investigator in San Francisco, whose concerns about the ethics of the Tuskegee study had been repeatedly ignored by the American Medical Association. Barzun leaked his story to the press and The New York Times ran it on 26 July 1972.
Shock and outrage were followed by Congressional hearings and the establishment of the National Research Act in 1974, which enshrined the principle of ‘informed consent’.
The catastrophic ethical failure of the Tuskegee study – including the fact that its existence was public knowledge for 40 years without attracting any significant protest within the medical community – was caused by two separate anxieties.
The first was the complex and unpredictable nature of syphilis itself, which could remain latent and asymptomatic for decades before re-emerging in a broad range of disfiguring and distressing ways. Often called the ‘great imitator’ because its symptoms were so similar to those of other diseases, it had haunted the European imagination for centuries. Understanding and treating syphilis was a medical priority and the high rate of infection in the poor black communities of the rural south was an acknowledged fact.
The second factor was the profoundly racist ideology that dominated the US medical establishment in the early 20th Century. The widespread belief was that freedom from slavery had been a psychological and medical disaster for African Americans, leading not only to a spike in mental illness but also to an explosion of venereal disease.
In 1910 Dr Thomas, W. Murrell, at the University College of Medicine in Richmond, produced a landmark study called ‘Syphilis and the American Negro’. Sub-titled ‘A Medico-Sociologic Study’, it was neither of those things but rather a pseudo-scientific rehearsal of fashionable eugenic theories that African Americans are members of a physically and mentally inferior race: “Those that are treated are only half cured, and the effort to assimilate a complex civilisation driving their diseased minds until the results are criminal records. Perhaps here, in conjunction with tuberculosis, will be the end of the negro problem. Disease will accomplish what man cannot do.”
It was this same warped logic that drove the Tuskegee study – if African Americans are more likely to suffer from syphilis, and less likely to seek treatment if infected, there was no ethical issue in not offering them treatment.
What makes Tuskegee more than just a grotesque entry in the long and distressing catalogue of institutionalised racism in the US is that its impact is still used to undermine trust in medical treatments among African American communities. The Capitol insurrectionist Simone Gold’s organisation, America’s Front Line Doctors, has campaigned against the Coronavirus vaccine calling it “another Tuskegee-style experiment on black Americans”.
But there is a more positive legacy. Acting for the NAACP, in 1973 the legendary attorney Fred Gray (who defended Rosa Parks in 1956) won a $10 million settlement from the US Government (equivalent to $52 million today), as well as free medical treatment for surviving participants and infected family members.
Gray also succeeded in getting President Clinton to issue a full public apology in 1997. His words are worth recalling: “What was done cannot be undone. But we can end the silence. We can stop turning our heads away.”
John Mitchinson is a writer and publisher and co-founder of Unbound, the world’s leading crowdfunding platform for books. He was one of the founders of BBC’s ‘QI’
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