Family of Tuskegee Syphilis Study participant say they’ll take COVID-19 vaccine but understand the distrust

Lillie Tyson Head and her daughter, Carmen Head Thornton, have reason to be skeptical about the COVID-19 vaccine. After all, it was Head’s father, Freddie Lee Tyson, who was unknowingly recruited into the now-infamous Syphilis Study at Tuskegee.

A sharecropper in Alabama in 1932, Tyson was one of 623 Black men recruited for the U.S. Public Health study at the Tuskegee Institute. The study was meant to record the natural progression of syphilis infection in Black men, but the researchers didn’t tell those who signed on. Tyson, who had congenital syphilis, was only told he’d be receiving free health care.

“They did not tell them they had syphilis, and the only thing they told them was they had bad blood and they were treating the bad blood,” Head told “Nightline” co-anchor Byron Pitts. “But they were not. They were lying to the people about that. They were deceiving them.”

The experiment lasted 40 years. During that time, the American government made efforts to ensure the participants in the study never knew the true intentions of the researchers. Even when they discovered penicillin was a reliable treatment for the infection, the participants were actively kept from receiving it.

Thornton says she was only a child when her grandfather answered the call from the U.S. Centers for Disease Control and Prevention to tell him what had really happened. Head said her father was a gentle, kind and wise man, but that call made him upset and disappointed.

“My father was a proud man and he was honest,” Head said. “For someone to call and tell him that he had been part of something for 40 years and had never been told the truth, and he was not aware of that, then that would also bring some shame. And you also have to understand that syphilis wasn’t something that people were proud of having.”

Although Tyson died in 1988, Head and Thornton have been carrying on his legacy in hopes that something like the experiment never happens again. In memory of the men who unknowingly contributed their bodies to the study, they started the Voices for Our Fathers Legacy Foundation, which aims to change the narrative surrounding the experiment and its participants and connect their descendants across the generations.

“There is a desire and need for us, through our foundation and through my professional work, to want to move this story of the syphilis study to one that speaks toward being a victim to being a victor, for moving from trauma to triumph,” said Thornton, who works as the director of research, grants, workforce and development at the National Academy of Child and Adolescent Psychiatry.

Both women say they understand why there is skepticism among Black Americans to take the COVID-19 vaccine. Although 27% of the public say they probably or definitely would not get vaccinated, 35% of Black adults say the same, despite being disproportionately affected by the virus, according to a survey by the Kaiser Family Foundation.

“History has not been kind to African Americans,” Thornton said. “It has not been kind, and because of misperceptions that are connected to what happened in the study … I think it helps to grow mistrust, and that’s one of the things that we deal with.”

Among the misconceptions surrounding the syphilis experiment, Head said many people believe the participants in the study were injected with the virus. “They were not,” she said, but rather given blood tests frequently.

Thornton said that to rebuild this trust, there needs to be more people of color in the medical field. Her mother said that while there are more people of color in these positions now, and that “things have changed, things have gotten better,” they could still improve more.

“I am committed to spending my life in public health and in working in the way that I do because we need that representation,” Thornton said. “That’s the reason why the syphilis study happened to begin with because there wasn’t that representation. There wasn’t those voices around the table. And so, we really do need to have that representation engaged in science, engaged in research and engaged in respectful health care.”

When asked if they’d take the COVID-19 vaccine themselves, they both said yes.

“Without hesitation,” Head said. “As soon as the vaccine is available for me, I’m taking it.”

Citing other health disparities prevalent within communities of color, Head also implored people to take charge of their health.

“I want people of color to be able to look at situations, especially when it comes to protecting their health, and do their due diligence in finding out the necessary information so that they can make the right decisions and not be afraid,” she said. “We have to step forward and not be afraid to make our lives better.”