50th Anniversary of the Tuskegee Syphilis Study
July 25, 2022, marks the 50th anniversary of the Tuskegee Syphilis Study becoming public. The study, initially called the Tuskegee Study of Untreated Syphilis in the Negro Male, became public knowledge after investigative journalist work by Jean Heller, who was a member of the Associated Press’ Investigative team. Heller’s published report revealed that a study on the effect syphilis had on the bodies of black men was launched in 1932.
The experiment saw the recruitment of 600 men, 200 who were syphilis free and 400 who were carriers of the disease. Of the 400 men with syphilis, half would be given treatment while the rest would not.
This unethical practice was carried out without the express consent of the men involved. The unaware participants of the study were simply told they were being treated for ‘bad blood’ which could have meant anemia or fatigue.
As payment for their participation in receiving medical “treatment”, the men were promised free trips to the hospital, a free hot meal, and a free burial after an autopsy had been carried out. The men could also receive treatment for any other illnesses except syphilis.
The study was carried out by the United States Public Health Service (PHS) with the cooperation of the Alabama State Board of Health, the Macon County Health Unit, and the Tuskegee Institute.
When the Tuskegee Syphilis Study began, there was no treatment for the disease. In 1942, a decade after the study had begun, it was discovered that penicillin was an effective treatment for the illness. Five years later, in 1947, penicillin became widely available for those who needed it. Unfortunately for the participants of the unethical study, penicillin was never offered to them as treatment.
Syphilis is a bacterial infection that is usually spread through sexual contact. Its earliest symptom is a painless sore on the genitalia or the mouth. It may develop into a rash after that, but it becomes more deadly in its latter stages, which may occur years later.
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The infection can lead to damage to the eyes, nerves, heart, and brain. It is also known to cause damage to the bones and dental structures.
By the time Heller’s report was published, 40 years had passed since the start of the study. According to reports, by that time, 28 of the participants had died from syphilis while more than a hundred had died from complications from the disease.
Many participants had died from heart disease, but the Center for Disease Control (CDC) claims it is difficult to determine if the heart disease was directly caused by syphilis.
A study by the American Medical Association showed that untreated syphilis reduced the life expectancy of black men between the ages of 25 and 50 by 17 percent, a statistic that is directly applicable to the Tuskegee study.
According to Heller’s report, in 1972, 74 of the participants in the study were still alive, having not suffered the fatal consequences of the disease.
While most of the victims of the study were men, it was also revealed that 40 female partners and 19 children of the remaining living participants contracted the disease.
The study caused a lot of physical and mental damage to the people involved. A great deal of shame and anger persisted in the community after the study was revealed.
”I’m angry about it, very, very angry about it,” said Carmen Head, whose grandfather, Freddie Lee Tyson, was a participant in the study. It created an everlasting legacy of distrust between the medical science field and the African American community.
When Heller’s story broke, it left the PHS with no choice but to stop the study. A Tuskegee Health Benefit Program was established by the government with the intention of treating the surviving participants.
The wives and children of the participants ended up being beneficiaries of the program as well. Legal action taken against the government resulted in a $10 million settlement. According to reports, the last participant of the Tuskegee study died in 2004.
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President Bill Clinton apologized for the study in 1997, 25 years after the study became public knowledge. “The United States government did something that was wrong—deeply, profoundly, morally wrong…
It is not only in remembering that shameful past that we can make amends and repair our nation, but it is in remembering that past that we can build a better present and a better future,” President Clinton said.
Jean Heller came upon the story when Edith Lederer handed her a file containing information on the Tuskegee study. Lederer was not an investigative reporter and thought Heller would do a better job at exposing what was going on in Tuskegee, Alabama. Lederer had received the file from Peter Buxtun, who had been an employee of the Public Health Services tracking venereal disease cases.
Buxtun is known for being a whistleblower who played a role in ending the Tuskegee Syphilis Experiment Heller read the file and was astounded by what she discovered. Heller is cited as calling the information in the file “ghastly.” Heller showed the contents of the file to Ray Stephens, the head of the investigative team, and he told her she should pursue the case.
The government refused to reveal any information about the study, so Heller did her research. While looking for information on the study, she discovered a medical journal that was publishing the findings of the study every few years.
“Every couple of years, they would write something about it,” she said. “Mostly it was about the findings — none of the morality was ever questioned.” Armed with credible evidence, Heller approached the PHS, and they finally admitted that the study was taking place.
The story was huge, leading to Heller winning esteemed journalism awards including the Robert F. Kennedy, George Polk, and Raymond Clapper Memorial awards. The Tuskegee Study report brought a lot of success and hype to Heller’s career, but she emphasized that it was not simply about her, but about the men who had been used as subjects of an experiment.