Lillie Tyson Head and her daughter, Carmen Head Thornton, have reason to be skeptical about the COVID-19 vaccine. After all, Head’s father, Freddie Lee Tyson, was recruited, unknowingly, in the now infamous Tuskegee syphilis study.
Goalkeeper in Alabama in 1932, Tyson was one of 623 black men recruited for the US public health study at the Tuskegee Institute. The study was designed to record the natural progression of syphilis infection in black men, but the researchers did not tell those who connected. Tyson, who had congenital syphilis, was only told that he would receive free medical care.
“They didn’t tell them they had syphilis, and the only thing they told them was that they had bad blood and that they were treating bad blood,” Head for Nightline co-anchor Byron Pitts said. “It simply came to our notice then. They lied to people about it. They were deceiving them. “
The experiment lasted 40 years. During that time, the US government made efforts to ensure that study participants never knew the true intentions of the researchers. Even when they found that penicillin was a reliable treatment for the infection, participants were actively prevented from receiving it.
Thornton says she was just a child when her grandfather answered the call from the US Centers for Disease Control and Prevention to tell her what really happened. Head said her father was a gentle, kind, and wise man, but this call made him angry and disappointed.
“My father was a proud man and he was honest,” Head said. “For someone to call him and tell him that he was part of something for 40 years and that he was never told the truth and he was not aware of it, then that would bring some shame. And you also have to understand that syphilis was not something that people were proud to have. ”
Although Tyson died in 1988, Head and Thornton continued their legacy in the hope that something like this would never happen again. In memory of the men who unknowingly contributed their bodies to the study, they started the Legacy Voices of Fathers Legacy Foundation, which aims to change the narrative around the experiment and its participants and connect their descendants over generations.
“There is a desire and need for us, through our foundation and my professional work, to want to move this story of the study of syphilis to one that talks about being a victim in being a winner, to move from trauma to triumph,” he said. said Thornton, who works as a director of research, grants, labor and development at the National Academy of Child and Adolescent Psychiatry.
Both women say they understand why there is skepticism among African Americans about getting the COVID-19 vaccine. Although 27% of the public say they will probably not be vaccinated, 35% of black adults say the same thing, despite being disproportionately affected by the virus, according to a survey by the Kaiser Family Foundation.
“History has not been good with African Americans,” Thornton said. “He was not kind and because of the misperceptions about what happened in the study … I think it helps to increase distrust and this is one of the things we face.”
Among the misconceptions about the syphilis experiment, Head said many people believe the study participants were injected with the virus. “They weren’t,” she said, but rather had frequent blood tests.
Thornton said that in order to rebuild that trust, there must be more people of color in the medical field. Her mother said that although there are now more people of color in these positions and that “things have changed, things have improved,” she could still improve.
“I’m committed to spending my life in public health and working the way I do, because we need that representation,” Thornton said. “This is why the study of syphilis happened for the first time, because there was no such representation. There weren’t those voices around the table. So we really need to have that representation involved in science, involved in research and involved in respectful health care. “
When asked if they would get the COVID-19 vaccine themselves, they both said yes.
“Without hesitation,” Head said. “As soon as the vaccine is available to me, I get it.”
Citing other health disparities prevalent within communities of color, Head also begged people to take care 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 to find out the information they need to make the right decisions and not be afraid,” she said. . . “We need to take a step forward and not be afraid to improve our lives.”