The Washington PostDemocracy Dies in Darkness

Descendants of men from horrifying Tuskegee study want to calm virus vaccine fears

Lillie Tyson Head, whose father, Freddie Lee Tyson, was in the Tuskegee syphilis study. She is president of the Voices for Our Fathers Legacy Foundation. (Alycee Byrd/For The Washington Post)
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Eighty-four-year-old Florine Edwards was thrilled to receive her coronavirus vaccination in Memphis in March. “When I hear people say, ‘Well, I’m not sure,’ I say, ‘You be sure, because this is important,’ ” she explains. The same goes for Lillie Tyson Head, 76, who received her second dose in March as well, near Roanoke: “I had no doubts about whether I was going to get it.” And if someone asks Leo Ware, 82, who was vaccinated the same month near Orlando, whether to get a vaccine, he’d say: “Definitely. Without hesitation.”

What Edwards, Head and Ware share — besides their enthusiasm for getting vaccinated — is that they are descendants of Black men who were unwitting subjects of the notoriously unethical federal syphilis study in Tuskegee, Ala. Edwards’s father, Head’s father and both of Ware’s grandfathers were lured into the study without knowing they were being studied. Today, the deceit they suffered at the hands of public health officials is a common reason cited for vaccine hesitancy in communities of color. Yet, as I learned recently when I spoke with Tuskegee descendants, many are — in part because of their family histories — making a point of getting vaccinated and encouraging others to do the same.

The disgraced U.S. Public Health Service research project, formally titled the “Tuskegee Study of Untreated Syphilis in the Negro Male,” started in 1932 and lasted until 1972, when it was exposed by the Associated Press and quickly shut down. The study enrolled 623 Black men, about 400 of whom had the disease, with the rest serving as a control group. They were told they were being treated for “bad blood,” a term used at the time for a number of ailments. In the mid-1940s, when penicillin was discovered to be an effective treatment for syphilis, it was withheld from the men, as doctors continued to chart the course of the untreated disease.

By the time the study was stopped, at least 100 of the men had died of syphilis or related complications, 40 wives had been infected and 19 children had been born with the disease. In 1997 President Bill Clinton hosted five of the eight men still living and apologized for the “clearly racist” program: “What the United States did was shameful, and I am sorry.” The last of the men in the study died in 2004.

Despite the apology, the Tuskegee study has become a stand-in for the broader history of mistreatment and neglect that communities of color have experienced from the medical system, says Rueben Warren, professor of bioethics and director of the National Center for Bioethics in Research and Health Care at Tuskegee University. The shameful record includes gynecological experiments on enslaved women, forced sterilization, unequal access to medical care and culturally incompetent doctors. The result has been an understandable mistrust of public health campaigns.

Reed Tuckson, co-founder of the Black Coalition Against Covid-19, was commissioner of public health in Washington during the AIDS crisis in the late 1980s. “The number one challenge we faced in trying to address that issue was the legacy of the Tuskegee syphilis experiment,” he told me. “The infuriating reality is that 40 years later, the health system and our society in general has done absolutely nothing to take away that distrust. The number one factor that we are fighting against now is the Tuskegee syphilis experiment. In every meeting, every conversation, it comes up — never does it not come up.”

However, details of the Tuskegee case are poorly understood, Tuckson says. For instance, many people falsely assume the men were injected with syphilis. “The outrageousness of the Tuskegee syphilis study was that African American men with a serious disease were denied access to the drug that would have saved them,” he says. “The irony today is people are using the Tuskegee experiment as a justification for denying ourselves access to a drug that can save us.”

To hear from Tuskegee families themselves, I contacted the Voices for Our Fathers Legacy Foundation, an organization of Tuskegee descendants founded in 2014 to keep alive the men’s stories and promote education. Lillie Tyson Head serves as president. She told me she understands and respects the feelings of people who see the Tuskegee study as a reason to be wary of the coronavirus vaccines. She thinks the descendants have a role to play in assuaging some of those fears — serving as“an encouragement or an inspiration for people to get the vaccine, especially people of color.”

The family trees of descendants no doubt contain some vaccine skeptics. But Head says the foundation’s most active members have been, or soon will be, vaccinated. They feel a duty to use the education and empowerment that their forefathers lacked to seek information about the vaccines — to assure themselves that this federal medical program is trustworthy and beneficial. “We understand the importance of a vaccine, and we also understand that our fathers were looking to better themselves, and that’s how they were deceived into the study, without information and without their consent,” Head says. “We have the opportunity to get all of the information that we could want and … give our consent to do the vaccine.”

In accounts of the study, the men are often summed up one-dimensionally as poor sharecroppers, but that hardly captures their character and the sacrifices they made to provide for their families during the time of Jim Crow racism. They helped build the airfield where the Tuskegee Airmen trained, and they helped construct the highway system. Their children and grandchildren grew up to be doctors, nurses, police officers, teachers and preachers. The study they endured led to dramatic reforms of medical research, new rights for patients and the creation of the bioethics center. “They are unsung heroes,” says Head, whose father, Freddie Lee Tyson, had congenital syphilis. He later moved the family to Connecticut, where he was a union carpenter.

Florine Edwards’s father, Gary Mitchell, was in the control group. She figures he thought he was helping the community to cure “bad blood” and taking care of his family at the same time. “What else did it matter, if you were doing those things?” she says.

“They were tillers of the earth as a way of providing food and income to feed the family,” Leo Ware says of his grandfathers — Frank Cooper, who had untreated syphilis, and Alex Ware, who was in the control group. When the study was exposed in 1972, Leo Ware says, “I really got furious.”

To transform the legacy of Tuskegee from mistrust to empowerment, the foundation awards scholarships every year to members of the next generation of descendants, with an emphasis on those pursuing studies in bioethics or health sciences. Descendants are advancing the cause in other ways as well. Barbara Ware Council, Leo Ware’s daughter, regularly volunteers for medical trials. She and two of her children and a grandson participated in a study of Regeneron as a treatment for covid-19. And another of her grandsons joined a study of one of the coronavirus vaccines for use in children.

Carmen Head Thornton, Lillie Tyson Head’s daughter, still remembers when, as a girl of about 7 or 8, she listened to her mother give a talk in church about their family’s experience with the study. “In that moment, I knew that I would be working in medicine or working in health in some capacity,” says Thornton, who directs the research, grants and workforce department of the American Academy of Child & Adolescent Psychiatry in Washington. “I have essentially dedicated my career to my grandfather and what happened to him.”

Not everyone knows of Thornton’s family connection to the syphilis study, and sometimes the coronavirus vaccines will come up in conversation. “They’ll say, ‘Well, you know, look what happened in Tuskegee, and that’s why I’m not going to ... get a vaccine,’ ” she says. “And I’m like, ‘Well, I am getting the vaccine as soon as I can.’ ”

David Montgomery is a staff writer for the magazine.

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