No, the Tuskegee Study Is Not the Top Reason Some Black Americans Question the COVID-19 Vaccine

As more surveys come out showing that Black Americans are more hesitant than white Americans to get the coronavirus vaccine, more journalists, politicians and health officials — from New York Gov. Andrew Cuomo to Dr. Anthony Fauci — are invoking the infamous Tuskegee syphilis study to explain why.

“It’s ‘Oh, Tuskegee, Tuskegee, Tuskegee,’ and it’s mentioned every single time,” says Karen Lincoln, a professor of social work at the University of Southern California. “We make these assumptions that it’s Tuskegee. We don’t ask people.”

When she asks the Black seniors she works with in Los Angeles about the vaccine, Tuskegee rarely comes up. People in the community are more interested in talking about contemporary racism and barriers to health care, she says, while it seems to be mainly academics and officials who are preoccupied with the history of Tuskegee.

“It’s a scapegoat,” Lincoln says. “It’s an excuse. If you continue to use it as a way of explaining why many African Americans are hesitant, it almost absolves you of having to learn more, do more, involve other people – admit that racism is actually a thing today.”

It’s the health inequities of today that Maxine Toler, 72, hears about when she talks to her friends and neighbors in LA about the vaccine. Toler is president of her city’s senior advocacy council and her neighborhood block club. She and most of the other Black seniors she talks to want the vaccine, but are having trouble getting it, she says, and that alone is sowing mistrust.

Those who don’t want the vaccine have very modern reasons for not wanting it. They tell Toler it’s because of religious beliefs, safety concerns or distrust for the former U.S. president and his relationship to science. Only a handful mention Tuskegee, she says, and when they do, they’re fuzzy on the details of what happened during the 40-year study.

“If you ask them what was it about and why do you feel like it would impact your receiving the vaccine, they can’t even tell you,” she says.

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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, though the government doctors never told them they had it.

Instead, researchers told the men they had come to cure “bad blood,” though they never intended to cure anything. Even when a cure for syphilis – penicillin – became widely available in the 1940s, the researchers withheld it and continued the study for decades, determined to track the disease to its end point: autopsy.

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With a horrific history like this, many scientists assumed that Black people would never want to participate in clinical research again. 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.

Several 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, a dentist from New York.

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. 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 “The Search for the Legacy of the USPHS Syphilis Study at Tuskegee,” a book about the research. {snip}

Tuskegee was not the deal breaker everyone thought it was.

These results did not go over well within academic and government research circles, Warren says, as they “indicted and contradicted” the common belief that low minority enrollment in research was the result of Tuskegee.

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