The fallout still endures from the infamous, racist, US medical ‘experiment’, writes Bette Browne
It is just over 50 years since the conclusion of one of the most shameful chapters in US medical history, when public health doctors studying syphilis withheld treatment from hundreds of African-American men.
The consequences of this so-called experiment still linger in the mistrust felt by many African-Americans towards the healthcare system. The US government has since described the exercise as “clearly racist”.
The syphilis experiment began in 1932 and continued until 1972. It involved 600 impoverished, rural African-American men in Tuskegee, Alabama, and occurred without their knowledge and consent.
It continued even after penicillin became the accepted treatment for syphilis by 1947. The medication was never offered to the men because doctors wanted to continue their study.
The experiment’s doctors convinced local physicians not to treat the men and research continued at the local Tuskegee Institute by doctors and scientists from the US Public Health Service (USPHS), a body that still exits after being restructured in 1995.
The Tuskegee experiment ended only after its details were revealed by the Associated Press (AP) in 1972, when it was alerted by a former public health service social worker and epidemiologist Mr Peter Buxton.
The ‘Tuskegee Study of Untreated Syphilis in the Negro Male’ involved 600 African-American men. Some 399 had syphilis and 201 who did not have the infection. Informed consent was not collected. Researchers told the men they were being treated for “bad blood” – a local term used to describe several ailments – while they monitored and collected information about the progression of the disease.
A group of researchers, including the Centres for Dis- ease Control and Prevention (CDC) and other government offices, had sanctioned the terms of the experiment to not treat people and allow their syphilis to go unchecked while doctors collected information about the progression of the disease.
If left untreated, syphilis can damage the heart, brain, and other organs, and can be life-threatening
The men were provided with free medical exams and meals and offered burial insurance. This offer was made to ensure the families would release their loved one’s bodies to the researchers.
“The Tuskegee study had nothing to do with treatment. Its purpose was to trace the spontaneous evolution of the disease in order to learn how syphilis affected African-American subjects. The men were not told they had syphilis, they were not warned about what the disease might do to them and, with the exception of a smattering of medication during the first few months, they were not given healthcare,” wrote Mr James Jones in his 1981 book, Bad Blood: The Tuskegee Syphilis Experiment.
“At the end of this 40-year death watch, more than 100 men had died from syphilis or related complications.”
Official figures show that at least 128 men died of syphilis or related complications, 40 wives were infected, and 19 children were born with congenital syphilis. Many families also suffered because of the stigma of the dis- ease. “People think it’s the scourge of the earth to have [syphilis] in your family,” Mr Albert Julkes, whose father was a victim of the experiment, told the US Equal Justice Initiative in 2022.
In 1969, the Public Health Service Centre for Disease Control in Atlanta, which had overseen the Tuskegee study, reviewed records of 276 people with syphilis (treated and untreated), the AP reported.
It found that seven men had died as a direct result of syphilis. Another 154 died of heart failure, but CDC officials said they could not determine how many of these deaths were caused by syphilis or how many additional deaths may have been linked to the disease.
As a result, the Assistant Secretary for Health and Scientific Affairs appointed a panel to review the study. In October 1972, the panel advised that it should be stopped. In March 1973, the panel also advised the Secretary of the Department of Health, Education, and Welfare to instruct the USPHS to provide all necessary medical care to the survivors of the study. The Tuskegee health benefit programme was established to provide these services and, in 1975, the men’s wives, widows and children were added to the programme.
In 2004 the last surviving victim, Mr Ernest Hendon, died. Mr Hendon, who was in the control group that did not have syphilis, died of natural causes associated with aging. He was 96. Mr Hendon, who grew up on the family farm with nine siblings, told the AP in 2001 that he had no idea about the reality of the study.
“They said it was a study that would do you good,” he said.
In 1997, Mr Hendon was in Tuskegee watching on television as President Bill Clinton delivered an apology to all the men in the Tuskegee experiment, branding it “clearly racist” (see panel).
“The United States government did something that was wrong – deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. I am sorry that your federal government orchestrated a study so clearly racist,” stated President Clinton.
“Men who were poor and African-American, without re- sources and with few alternatives, believed they had found hope when they were offered free medical care by the Unit- ed States Public Health Service. They were betrayed.”
In 1973, Tuskegee civil rights lawyer Mr Fred Gray filed a $1.8 billion class-action suit on behalf of the victims of the study, their families and heirs. The suit resulted in an out-of-court settlement of more than $10 million in 1975.
The impacts of the scandal have been enduring. Studies have shown how the Tuskegee experiment deepened mistrust of the medical community amoung African-American people and led to increasing disparities in the delivery of healthcare.
The late Democratic Senator Ted Kennedy, then Chairperson of the Senate health subcommittee, deplored the details of the Tuskegee case as they emerged in 1972. In February and March 1973, he conducted congressional hearings into the study, which led to the passage of the National Research Act and the establishment of insti- tutional review boards, principles of informed consent, and protection of vulnerable populations. At the time, Senator Kennedy expressed concern about whether any other such experiments existed.
Deliberate infection of Guatemalans
His concerns were well founded. In 2010, it was discovered that the same group of researchers in the US Public Health Service had deliberately infected hundreds of Guatemalan people with syphilis and gonorrhoea in the 1940s. Their apparent goal was developing better methods for preventing these infections, particularly among the military.
Several members of the Guatemalan military were secretly infected with gonorrhoea by the American re- searchers, while other groups, including patients in a psychiatric facility and some prisoners, were also ex- posed to syphilis and chancroid.
More than 1,300 people were infected with venereal dis- ease, more than half of them with syphilis. They included male and female patients in a psychiatric hospital and in- mates exposed to infected prostitutes brought into jails. In some cases, the American researchers poured bacteria on scrapes made on genitals, arms or faces.
The experiments in Guate- mala were uncovered in ar- chives by Wellesley College Prof Susan Reverby in 2003 after years of research into the Tuskegee experiments. She said the Guatemalan government had given permission for the tests.
In October 2010, the then Secretary of State Hillary Clinton issued a public apology to the government of Guatemala for violating its citizens’ human rights in what had been called ‘The US Public Health Service Sexually Transmitted Disease Inoculation Study of 1946-1948.’
“The (study) from 1946-1948 in Guatemala was clearly unethical (and) we are outraged that such reprehensible research could have occurred under the guise of public health,” Ms Clinton said. “We deeply regret that it happened, and we apologise to all the individuals who were affected by such abhorrent research practices.”
A 2016 a paper by Prof Marcella Alsan at Stanford Medical School and Prof Marianne Wanamaker at University of Tennessee showed the negative health impacts that the Tuskegee study had on African-American people.
By 1980, its impact had contributed to reducing life expectancy among African-American men over 45 by more than a year. It also accelerated an erosion of trust in doctors and made African-Americans reluctant to seek healthcare.
The fallout from Tuskegee increased in subsequent decades and by the time Covid-19 hit America in 2020, African-American people were shown to be especially reluctant to receive Covid-19 vaccination. A poll in February 2021 by the Kaiser Family Foundation health organisation found that more than half of African-American adults said they did not have immediate plans o get vaccinated.
The National Association for the Advancement of Coloured People found that only 14 per cent of African-American people trusted the vaccines’ safety and only 18 per cent said they would definitely get vaccinated. It also found that African-Americans were twice as likely to trust a medic of their own racial group than one from outside of it. However, only 5 per cent of US physicians are African-American.
The mistrust of the US healthcare system among African-Americans is two-fold, according to Mr Rueben Warren, Director of the National Centre for Bioethics in Re- search and Health Care at Tuskegee University. “It’s both historical and current,” he told NPR radio. “And not either/ or, but both/and.”
Ms Cheryl Owens, a nurse who grew up in Tuskegee, told NPR she had been talking with friends and older relatives who said they were afraid to get the Covid-19 vac- cine. “So, I asked why?” she said. “And it was like, ‘Well, you remember that Tuskegee syphilis study. That’s why.'”
In the historical context it should be noted that for more than 100 years, the American Medical Association (AMA), by its own admission, “actively reinforced or passively accepted racial inequalities and the exclusion of African-American physicians.” On 30 July 2008, Dr Ronald M Davis, then immediate past President of the AMA, apologised for more than a century of AMA policies that had excluded African-Americans from the Association, in addition to policies that also barred them from some state and local medical societies.
Doctors, scientists and researchers have a number of lessons to learn from the conduct of the Tuskegee experiment, according to Prof Martin Tobin, Professor of Medicine at the Hines VA Hospital at Loyola University Medical School in Chicago, who authored a paper earlier this year in American Journal of Respiratory and Critical Care Medicine about the Tuskegee experiments.
“The study was not conducted in secret. The CDC re- ported the dreadful complications of untreated syphilis in 15 articles published in high visibility medical journals, but not one doctor anywhere in the world published a protest,” stated Prof Tobin, speaking at a Q&A upon the publication of his paper.
“In 1966, a social worker (Peter Buxton) wrote to the CDC, but the CDC told him that the study was too important for science to stop it. After being rebuffed repeatedly across six-and-a-half years, the social worker finally reached a journalist and the story broke on the front page of The New York Times. The American public was horrified, and Congress introduced regulations for conducting medical research.”
However, Prof Tobin warned that it would be wrong to believe that new regulations and precautions can pre- vent something like Tuskegee from ever happening again. Doctors and researchers must constantly ask ethical questions and listen to their conscience.
“When dreadful things happen, generally, the leader- ship of NIH (National Institutes of Health) and CDC, as happened with Guatemala, immediately tend to come out and say, this could never happen again, we have all kinds of precautions in there. I don’t believe that that’s the case. I mean, you need the precautions. But in addition to that, the primary message is that for the researchers them- selves you have to ask yourself, is this study truly ethical – that’s the crucial part. And that did not happen in Tuskegee, the only person who was troubled about the ethics was the social worker.”
He continued: “Regulations will never be able to compensate from a non-ethical researcher. That is the key thing – that you have the people who do research, that they ask themselves questions, because there was a huge number of different doctors involved in the Tuskegee study over 40 years. And so, these people all just fell in with everything else. They didn’t ask any questions. And that is the real lesson. And that is a huge problem in medical research.
“One of the real embarrassing things for the entire medical profession is that these ravages were reported in 15 papers in high visibility medical journals, and not one doctor anywhere wrote an article in protest. So, it’s not just American doctors. It’s not just the CDC, this applies to the medical profession around the world.”
‘We must not leave behind our conscience’
Excerpts from President Bill Clinton’s apology in May 1997 to the survivors of the Tuskegee syphilis experiment.
“The eight men [Messrs Herman Shaw; Charlie Pollard; Carter Howard; Fred Simmons; Frederick Moss; Sam Doner; Ernest Hendon; and George Key] who are survivors of the syphilis study at Tuskegee are a living link to a time not so very long ago that many Americans would prefer not to remember, but we dare not forget.
“So today America remembers the hundreds of men used in research without their knowledge and consent. We remember them and their family members. Men who were poor and African-American, without resources and with few alternatives, they believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed. Medical people are supposed to help when we need care, but even once a cure was discovered, they were denied help, and they were lied to by their government.
“The United States government did something that was wrong – deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens.
“To the survivors, to the wives and family members, the children, and the grandchildren, I say what you know: 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 at 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 American people are sorry – for the loss, for the years of hurt. You did nothing wrong, but you were grievously wronged. I apologise and I am sorry that this apology has been so long in coming.
“To our African-American citizens, I am sorry that your federal government orchestrated a study so clearly racist. That can never be allowed to happen again.
“The legacy of the study at Tuskegee has reached far and deep, in ways that hurt our progress and divide our nation. We cannot be one America when a whole segment of our nation has no trust in America. An apology is the first step, and we take it with a commitment to rebuild that broken trust.
“We can begin by making sure there is never again another episode like this one. We need to do more to ensure that medical research practices are sound and ethical, and that researchers work more closely with communities.
“The study at Tuskegee served to sow distrust of our medical institutions, especially where research is involved. Many medical studies have little African-American participation and African-American organ donors are few. This impedes efforts to conduct promising research and to provide the best healthcare to all our people, including African-Americans.
“Science and technology are rapidly changing our lives with the promise
of making us much healthier. But with these changes we must work harder to see that as we advance we don’t leave behind our conscience.
“The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts.”
In October 2010, the US government formally apologised to the Guatemalans who were deliberately infected with syphilis and gonorrhoea in the 1940s, and their families. President Barack Obama had an investigation conducted by the Presidential commission for the study of bioethical issues on 24 November 2010. The commission concluded that the experiments “involved gross violations of ethics as judged against both the standards of today and the researchers’ own understanding”. The following example is from the work of the Commission:
“Berta was a female patient in the psychiatric hospital. Her age and the illness that brought her to the hospital are unknown. In February 1948, Berta was injected in her left arm with syphilis. A month later, she developed scabies. Several weeks later, [lead investigator Dr John] Cutler noted that she had also developed red bumps where he had injected her arm, lesions on her arms and legs, and her skin was beginning to waste away from her body. Berta was not treated for syphilis until three months after her injection. Soon after, on August 23, Dr Cutler wrote that Berta appeared as if she was going to die, but he did not specify why. That same day he put gonorrheal pus from another male subject into both of Berta’s eyes, as well as in her urethra and rectum. He also re-infected her with syphilis. Several days later, Berta’s eyes were filled with pus from the gonorrhoea, and she was bleeding from her urethra. On August 27, Berta died.”