The "Tuskegee Study of Untreated Syphilis in the Negro Male" was a government sponsored, taxpayer-funded study that began in 1932. Some people believe that researchers injected the men with syphilis, but that's not true. Rather, they recruited 399 Black men from Alabama who already had the disease.
Researchers told the men they had come to Tuskegee to cure "bad blood," but never told them they had syphilis, and the government doctors never intended to cure the men. Even when an effective treatment for syphilis – penicillin – became widely available in the 1940s, the researchers withheld it from the infected men and continued the study for decades, determined to track the disease to its end point: autopsy.
By the time the study was exposed and shut down in 1972, 128 of the men involved had died from syphilis or related complications, and 40 of their wives and 19 children had become infected.
With a horrific history like this, many scientists assumed that Black people would want nothing to do with the medical establishment again, particularly clinical research. Over the next three decades, various books, articles, and films repeated this assumption until it became gospel.
"That was a false assumption," says Dr. Rueben Warren, director of the National Center for Bioethics in Research and Health Care at Tuskegee University in Alabama, and former associate director of Minority Health at the Centers for Disease Control and Prevention from 1988 to 1997.
A few researchers began to question this assumption at a 1994 bioethics conference, where almost all the speakers seemed to accept it as a given. The doubters asked, what kind of scientific evidence is there to support the notion that Black people would refuse to participate in research because of Tuskegee?
When those researchers did a comprehensive search of the existing literature, they found nothing.
"It was apparently a 'fact' known more in the gut than in the head," wrote lead doubter Ralph Katz, an epidemiologist at the NYU College of Dentistry.
So Katz formed a research team to look for this evidence. They completed a series of studies over the next 14 years, focused mainly on surveying thousands of people across seven cities, from Baltimore to San Antonio to Tuskegee.
The conclusions were definitive: While Black people were twice as "wary" of participating in research, as compared to White people, they were equally willing to actually participate when asked. And, there was no association between knowledge of Tuskegee and willingness to participate.
"The hesitancy is there, but the refusal is not. And that's an important difference," says Warren, who later joined Katz in editing a book about the research. "Hesitant, Yes. But not refusal."
Tuskegee was not the deal breaker everyone thought it was.