As the U.S. tries to get as many shots of the COVID-19 vaccine into as many arms as possible, some have questioned why so many black people appear hesitant to roll up their sleeves.
Throughout the vaccination campaign and Black History Month, officials cited the infamous Tuskegee Syphilis Experiment as a root cause of this hesitation. Throughout the 20th Century, doctors asked black men to join the study without telling them they had the disease. The participants were also denied treatment even after the U.S. found a cure.
As awful as this was, many people in the black community argue it has relatively nothing to do with the current vaccination campaign, and bringing it up won’t help convince more black Americans to get their shots.
Changing the Narrative on Tuskegee
Over the last few months, the word “Tuskegee” has been all over the news. Public figures including Dr. Anthony Fauci and New York Governor Andrew Cuomo have referred to the experiment to explain why so many black people aren’t getting vaccinated.
But Karen Lincoln, a professor of social work at the University of Southern California and founder of Advocates for African American Elders, says that’s a fallacy: “It’s ‘Oh, Tuskegee, Tuskegee, Tuskegee,’ and it’s mentioned every single time. We make these assumptions that it’s Tuskegee. We don’t ask people.”
When Lincoln asks older black people how they feel about getting vaccinated, Tuskegee rarely comes up. Residents talk more about contemporary racism, overcoming barriers to healthcare, and how providers have failed to reach out to the community.
As for the study, “It’s a scapegoat,” Lincoln 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.”
She believes academics, historians, and government officials are the only ones talking about Tuskegee all these decades later.
In her experience, only a handful of black people even remember the study. For those that do, they are hazy on the details of what happened to the black men involved.
“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,” Lincoln added.
For many black folks, mentioning Tuskegee is a way of focusing on the past instead of the issues affecting the black community today.
“It’s almost the opposite of Tuskegee,” Lincoln said. “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.”
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, says society’s obsession with Tuskegee has done more harm than good.
Over the last few decades, the experiment has been featured in countless books, articles, research reports, and even feature films.
According to Warren, instead of focusing on systemic racism, the narrative gives this impression that black people want nothing to do with medicine or the healthcare industry. But that is a “false assumption.”
Current Reasons for Vaccine Hesitancy
Speaking with members of the black community, Lincoln found little mention of the experiment. Instead, they talked about how difficult it is for them to get a vaccine, which helps sow distrust.
Other members pointed to their distrust of former President Donald Trump and his lack of appreciation for science. Other folks say their religious beliefs prevent them from getting a shot.
Dr. Ralph Katz, an epidemiologist at the New York University College of Dentistry, decided to find out whether the experiment is affecting the way black people think about institutionalized medicine. After 14 years of research, his team discovered that while black people appear twice as “wary” of participating in medical studies and trials compared to white people, they were just as likely to sign up when asked to participate.
“The hesitancy is there, but the refusal is not. And that’s an important difference,” said Warren, who later joined Katz in analyzing the research. “Hesitant, yes. But not refusal.”
Warren also said doctors give themselves permission to look the other way if they feel that a certain portion of the population isn’t interested in medicine.
“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,” she said.
As Lincoln puts it, “If you say ‘Tuskegee,’ then you don’t have to acknowledge things like pharmacy deserts, things like poverty and unemployment,” she said. “You can just say, ‘That happened then…and there’s nothing we can do about it.’”
Instead of focusing on what happened in the 1950s and 60s, Lincoln would like to see more providers address the issues facing black Americans today.