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 unwittingly recruited into the now infamous Syphilis study in Tuskegee.
Tyson, a shareholder in Alabama in 1932, was one of 623 black men recruited for the U.S. 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 applied. Tyson, who had congenital syphilis, was only told he would receive free health care.
“They didn’t tell them they had syphilis, and all they told them was they had bad blood and they treated the bad blood,” Head told “Nightline,” co-anchor Byron Pitts. But they weren’t. She lied to people about that. They cheated on them. “
The experiment lasted 40 years. During that time, the U.S. government made efforts to ensure that the study participants never knew the researchers’ true intentions. Even when they found that penicillin was a reliable treatment for the infection, the participants were actively dissuaded from getting it.
Thornton says she was just a child when her grandfather answered the call from the U.S. Centers for Disease Control and Prevention to tell him what really happened. Head said her father was a gentle, kind, and wise man, but the call upset and disappointed him.
“My father was a proud man and he was honest,” said Head. “If someone were to call and tell him that he has been part of something for 40 years and has never been told the truth, and that he was not aware of it, that would be some shame too. And you also have to understand that syphilis was not something people were proud of. “
Although Tyson died in 1988, Head and Thornton have continued his legacy in the hope that something like the experiment never happens again. In memory of the men who unwittingly contributed their bodies to the research, they started the Voices of our Fathers Legacy Foundation, which aims to change the story around the experiment and the participants, connecting their descendants from generation to generation. .
“There is a desire and need for us, through our foundation and through my professional work, to want to move this story from the syphilis study to one that talks about being a victim to a victor, to move from trauma to triumph,” said Thornton, who works as director of research, fellowships, human resources, and development at the National Academy of Child and Adolescent Psychiatry.
Both women say they understand why black Americans are skeptical about taking the COVID-19 vaccine. While 27% of the public says they probably or certainly would not get vaccinated, 35% of black adults say the same, despite being disproportionately affected by the virus, according to a study by the Kaiser Family Foundation.
“History has not been kind to African Americans,” said Thornton. “It hasn’t been nice, and because of misconceptions related to what happened in the study … I think it helps to breed suspicion, and that’s one of the things we’re dealing with.”
Among the misconceptions surrounding the syphilis experiment, Head said many people believe the study participants were injected with the virus. “They weren’t,” she said, but had regular blood tests.
Thornton said that to rebuild this confidence, more people of color are needed 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 gotten better,” they could still get better.
“I am determined to spend my life in public health and work the way I do because we need that representation,” said Thornton. “That’s why the syphilis study started initially, because that representation was not there. There were no voices around the table. And so we really need that representation that is engaged in science, engaged in research, and engaged in respectful health care. “
When asked if they would take the COVID-19 vaccine themselves, they both said yes.
“Without hesitation,” said Head. “As soon as the vaccine is available to me, I’ll take it.”
Citing other health inequalities that are prevalent within communities of color, Head also begged 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 to find the necessary information so that they can make the right decisions and not have to fear,” she said . “We should step forward and not be afraid to improve our lives.”