The unethical 40-year Tuskegee syphilis study is often cited as a reason for vaccine hesitancy among Black Americans. Critics point to several reasons this is problematic, according to an NPR report.
The "Tuskegee Study of Untreated Syphilis in the Negro Male" was conducted by the U.S. Public Health Service from 1932 until it was exposed by investigative journalist Jean Heller and shut down in 1972. Six-hundred Black men were enrolled — 399 who had syphilis and 201 who were control subjects. Most of the men were poor and illiterate sharecroppers from Macon County, Ala.
The government physicians told participants they were being treated for "bad blood," but never intended to cure the men. When penicillin became the standard treatment for the disease in 1947, the medicine was withheld. By the end of the "study," 128 of the men involved had died from syphilis or related complications and 40 of their wives and 19 children had become infected.
This horrific chapter in American history is deeply relevant as healthcare confronts its systemic racism and inequities, but leaders may want to think twice before explaining COVID-19 vaccine hesitancy by pointing to Tuskegee.
"It's 'Oh, Tuskegee, Tuskegee, Tuskegee,' and it's mentioned every single time," Karen Lincoln, PhD, associate professor, director of the USC Hartford Center of Excellence in Geriatric Social Work and founder and chair of Advocates for African American Elders at the University of Southern California, told NPR. She said people often assume Black Americans are hesitant about vaccination or medical care due to Tuskegee — but they do not ask.
Pointing to a historical event may also serve as a scapegoat and distract from the racism, inequities, and bias in healthcare today. "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," said Dr. Lincoln. She said the current failings of the healthcare system cause more distrust than events of the past.
California resident Maxine Toler, 72, told NPR most of the other Black seniors she talks to in Los Angeles want the vaccine but are having difficulty accessing it. Ms. Toler knows Black people who don't want the vaccine, and they talk about their religious beliefs, safety concerns or distrust for the former administration and its relationship with science. A handful mention Tuskegee, she says.
Hesitancy is not synonymous with refusal. A series of studies completed from 1994 through 2008 to examine the link between Tuskegee and contemporary attitudes toward medicine in the Black community found Black people were twice as hesitant to participate in biomedical research compared to white people, but they were equally willing to participate when asked. There was no link between knowledge of Tuskegee and willingness to participate.
But healthcare institutions may accept initial hesitancy as flat-out refusal. "If I don't want to go to the extra energy, resources to include the population, I can simply say they were not interested," Warren Reuben, PhD, director of the National Center for Bioethics in Research and Health Care at Tuskegee (Ala.) University, told NPR. "They refused."
Finally, there is little difference in coronavirus vaccine hesitancy among Black and white Americans, according to a March 12 survey from NPR, PBS NewsHour and Marist: 25 percent of Black respondents and 28 percent of white respondents said they did not plan to get a shot.