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 recruited without realizing it in the now infamous Syphilis Study in Tuskegee.
Participating 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 aimed to record the natural progression of syphilis infection in black men, but the researchers did not tell those who logged in. Tyson, who had congenital syphilis, was only told he would receive free health care.
“They weren’t told they had syphilis, and all they told them was that they had bad blood and that they were treating bad blood,” said Head Byron Pitts, co-anchor of “Nightline.” “It simply came to our notice then. They were lying to people about it. They were cheating on them. “
The experiment lasted 40 years. During this time, the U.S. government made efforts to ensure that participants in the study never knew the true intentions of the researchers. Even when they discovered that penicillin was a reliable treatment for the infection, participants were prevented 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 her what had really happened. Head said his father was a kind, kind and wise man, but that call bothered and disappointed him.
“My dad was a proud man and he was honest,” Head said. “If someone called him and told him that he had been a part of something for 40 years and that he had never been told the truth, and that he was not aware of it, then that would also lead to a bit of embarrassment. And you too to understand that syphilis was not something that people were proud to have ”.
Although Tyson died in 1988, Head and Thornton have followed their legacy in the hope that something like this will not happen again. In memory of the men who unknowingly contributed their bodies to the study, they started the Voices of Our Parents Foundation, which aims to change the narrative surrounding the experiment and its participants and connect their descendants to through the generations.
“There is the desire and the need that, through our foundation and my professional work, we want to transfer this history of the study of syphilis to one that speaks of being a victim to be a winner, of going from trauma to triumph “. said Thornton, who works as director of research, grants, staffing and development at the National Academy of Child and Adolescent Psychiatry.
Both women say they understand why there is skepticism among black Americans about getting the COVID-19 vaccine. While 27% of the public say they would probably or definitely 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. “He hasn’t been kind, and because of misperceptions about what happened in the studio … I think it helps to grow distrust, and that’s one of the things we’re dealing with.”
Among the misconceptions surrounding the syphilis experiment, Head said many people believe study participants were injected with the virus. “They weren’t,” he said, but they were given blood tests frequently.
Thornton said to rebuild that trust there needs to be more people of color in the medical field. His mother said that while there are now more people of color in these positions, and that “things have changed, things have improved,” they could improve even more.
“I’m committed to spending my life in public health and working the same way I do because we need that representation,” Thornton said. “That’s why the study of syphilis started because there wasn’t that representation. There weren’t those voices around the table. So we really have to have that representation dedicated to science, to science. research and 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 prevalent health disparities in communities of color, Head also implored people to take care of their health.
“I want people of color to be able to see situations, especially when it comes to protecting their health, and do their due diligence to find out the information they need so they can make the right decisions and not be afraid,” he said. . “We need to take a step forward and not be afraid to improve our lives.”