For months, journalists, politicians and health officials have invoked the infamous Tuskegee syphilis study to explain why Black Americans are more hesitant than whites to get the coronavirus vaccine.
"It's 'Oh, Tuskegee, Tuskegee, Tuskegee,' and it's mentioned every single time," said Karen Lincoln, a professor of social work at the University of Southern California and founder of Advocates for African American Elders. "We make these assumptions. … We don't ask people."
When she asks Black seniors about the vaccine, Tuskegee rarely comes up. People in the community talk about contemporary racism and barriers to health care, she said, while it seems to be mainly academics and officials who are preoccupied with the history of Tuskegee.
"It's a scapegoat," she said. "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 asks her friends and neighbors in Los Angeles what they think about the vaccine. As president of her city's senior advocacy council and her neighborhood block club, Toler said she and most of the other Black seniors she talks with want the vaccine but are having trouble getting it. And that alone sows mistrust, she said.
Toler said the Black people she knows who don't want the vaccine have very modern reasons for not wanting it: religious beliefs, safety concerns or a distrust of former President Donald Trump. Only a handful mention Tuskegee, she said.
The "Tuskegee Study of Untreated Syphilis in the Negro Male" was a government-sponsored, taxpayer-funded study that began in 1932. Scientists recruited 399 Black men from Alabama who had syphilis, but never told them they had the disease — and the government doctors never intended to cure the men. Researchers withheld treatment, determined to track the disease to its endpoint: autopsy.
Given this horrific history, many scientists assumed Black people would want nothing to do with the medical establishment again, particularly clinical research.
"It was apparently a 'fact' known more in the gut than in the head," wrote Dr. Ralph Katz, an epidemiologist. So he formed a research team and the conclusions were definitive: While Black people were twice as "wary" of participating in research, compared with white people, they were equally willing to 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," said Dr. Rueben Warren, director of the National Center for Bioethics in Research and Health Care at Tuskegee University. "Hesitant, yes. But not refusal."
Now researchers had to confront the shortcomings of their own recruitment methods. Many never invited Black people to participate. When they did, they often did not try very hard. For example, two studies of cardiovascular disease offered enrollment to more than 2,000 white people, compared with no more than 30 people from minority groups.
B. Lee Green, vice president of diversity at Moffitt Cancer Center in Florida, said hesitancy "is more related to individuals' lived experiences, what people live each and every day."
Kaiser Health News produces in-depth journalism about health issues. This story is from a partnership that includes NPR, KQED and KHN.