A broad narrative about hesitancy among African Americans toward the coronavirus vaccine is that the Tuskegee Syphilis Study, in which a group of Black men in Alabama was left untreated for the disease for decades, is why Black people are reluctant.
But the truth is that although the infamous study is often cited by politicians, journalists, and even scientists, and while that could be a factor in some instances, it seems that racism in medicine has directly affected Black populations over the years.
“It's ‘Oh, Tuskegee, Tuskegee, Tuskegee,’ and it's mentioned every single time,” Karen Lincoln, a professor of social work at the University of Southern California, told San Francisco radio station KQED. “We make these assumptions that it's Tuskegee. We don't ask people.”
In speaking with senior citizens in the Los Angeles area that she works with, Lincoln says she never hears the Tuskegee experiment talk. People are more likely to speak about racial hindrances when it comes to health care. Only the academics are worried about 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.”
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID) has publicly invoked Tuskegee as a reason for ambivalence among Black people about the vaccines.
“We have a history that has gotten much, much better lately, in the last few decades, but a bad news history going back to things like Tuskegee,” he said in a July interview with BET.com. But there is actually more to the hesitancy than just that experiment, Lincoln and others say.
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The Tuskegee experiment, which began in 1932, is cited as one of the most egregious examples of racism in science in U.S. history. It involved 600 Black men -- 399 who were infected and another 201 who were uninfected as a control. Most of them were poor sharecroppers from the area. The research was conducted on the campus of the then-Tuskegee Institute by the U.S. Public Health Service.
The men, who were mostly illiterate and were not informed they were part of a medical study, were attracted by offers of high quality health care rarely received by their peers. But instead of being given medicines to treat syphilis, which were available by 1947, they were told they simply had “bad blood.” Prior to 1947, however, dozens of men had died and their wives and children infected.
In 1972, the Associated Press reported about the 40-year experiment on Black men taking place under the guise of a medical study. That prompted a considerable backlash and, ultimately, a panel blasted the poor ethics of those involved. The study officially ended that year. A 1973 class-action lawsuit on behalf of the victims resulted in a $9 million settlement.
As terrifying as it was that the U.S. government could use Black people as guinea pigs, the reasoning for many relates more to modern health discrepancies. Maxine Toler, 72, says when she talks to others in her age group about the vaccine, they don’t bring up Tuskegee.
Instead, she says, they would like the vaccine but have trouble getting it, causing them to mistrust the system. The people who do not want the vaccine feel that way for various reasons, including religion, personal safety, or distrustful attitudes toward former President Donald Trump and how he sowed misinformation. Just a few people mention the experiment, and they're knowledge is unclear.
“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,” Toler told KQED. But she knows all about it and says it only serves to distract from the real issue. “It's almost the opposite of Tuskegee. Because they were being denied treatment. And this is like, we're pushing people forward: Go and get this vaccine. We want everybody to be protected from COVID.”
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The assumption that Black people would shy away from modern medicine because of the Tuskegee experiment was a false one, says Dr. Reuben Warren, director of the National Center for Bioethics in Research and Health Care Tuskegee University.
As early as 1994, research began to show that the experiment was not behind any Black people's refusals to be a part of research or to take medicines. "The hesitancy is there, but the refusal is not. And that's an important difference," Warren told KQED. "That was the excuse that they used. If I don't want to go to the extra energy, resources to include the population, I can simply say they were not interested. They refused."
But it turns out offers to be a part of research in many cases were never extended to Black people. Two cardiovascular disease studies cited by KQED showed that enrollment was offered to 2,000 white people, but only 30 people of color.
Hesitancy for many Black people is being confused for, or replaced with refusal as a reason many in the community have shied away from the vaccine. The experiment became a way to fit that easily into a box that can be explained publicly, rather than the complex culture of racism that permeates virtually every American institution, including medicine.
“If you say Tuskegee, then you don't have to acknowledge things like pharmacy deserts, things like poverty and unemployment,” said Lincoln. “You can just say, ‘That happened then. Things are different now and there’s nothing we can do about it.’ ”