Voices for Our Fathers Keeping Memory of Horrific Study AliveFebruary 10, 2016 |
In 1973, Lillie Head’s family faced some catastrophic news. An article in Ebony magazine was making the rounds about an obscure medical study that had been conducted in Tuskegee, Alabama.
That study was the now infamous Tuskegee syphilis experiment, officially known as the U.S. Public Health Service Syphilis Study at Tuskegee, carried out from 1932 to 1972 by the U.S. Public Health Services (USPHS) and the Centers for Disease Control (CDC).
Doctors selected between 600 and 623 Black men (the number is debated) from rural communities in and around Tuskegee. The men were told they had “bad blood,” and, in return for participating in a study on their condition, they were promised free medical treatment, along with meals at the blood testing locations and burial assurances.
In reality, “bad blood” was a code word for many ailments, including syphilis. Of those men, approximately two-thirds already had the disease, unbeknownst to them. The remaining third, who were free of it, were included in the study as a control group. The medical professionals who organized the study wanted to look at the long-term effects of syphilis on the body.
Although penicillin was found to be an effective cure for syphilis by the mid-1940s, the men were deliberately kept in the dark about their conditions, preventing them from seeking treatment. In 1936, four years after the study started, doctors decided that the men would be trial subjects until their deaths.
An estimated 128 men died of the disease and related complications over the ensuing decades. Not only that, but their wives and children were exposed to it as well, jeopardizing the health of an entire community and subsequent generations.
As Head tells it, the way her family found out about the study added to the horror of the situation. Her brother Wallace, who was then in the Air Force, was the one to broach the bad news to their father, Fred Lee Tyson.
She relates, “He called my father and said, ‘Dad, there was this article in Ebony magazine about a study that was done and has gone on for over 40 years! Do you know anything about that?’ And Daddy said, ‘No, I don’t know anything about that.’ My brother said, ‘Well, you didn’t know because they didn’t tell you.’”
A few days later, representatives from the Centers for Disease Control and Prevention (control of the study had moved from the USPHS to the CDC by the 1960s) called Tyson’s home in Connecticut. It was all true.
Tyson was one of the victims of the study, and the whole family, his wife Johnnie Mae Tyson and their eight children, would have to be tested to make sure that they, too, were not at risk from the disease.
“We, the family, were in shock,” Head says. No one in her family could quite fathom why doctors would do such a thing, over so many years, to innocent men, women and children. For her father, it was a horrible blow.
“I know my father was very hurt, and he was shamed,” Head says. “My father was a very proud man, with a lot of wisdom, and he just couldn’t get over the fact that he didn’t realize what was going on.”
Still, she says, he somehow found a measure of peace and forbearance toward the perpetrators of the study. “I don’t think he was feeling hatred toward anyone, which I think was amazing,” Head says. “He just said, ‘We can’t do anything about what they’ve done, now, but you can make sure that it doesn’t happen again.’”
Remembering the past
History is littered with instances of the exploitation of communities of color at the hands of medical professionals. USPHS physician John Charles Cutler led experiments in Guatemala that went on from 1946 to 1948, in which prisoners and other vulnerable members of the community were infected with syphilis to study how the disease spread. Cutler went on to participate in the Tuskegee study in the 1960s.
Going back earlier in Alabamian history, the so-called father of gynecology, J. Marion Sims, advanced his surgical knowledge and established a name for himself while living in the state and experimenting on enslaved women. Sims is condemned today for denying anesthesia during procedures to the enslaved women upon whom he tested various surgical techniques.
As morally and ethically corrupt as the Tuskegee syphilis experiment may have been, it was allowed to go on for 40 years with the knowledge of the medical community. Articles about the study appeared in medical journals to limited, if any, outcry. It was not until the story was picked up by the media nationally that any move was taken to shut it down.
Once the study came to light, it was terminated quickly. The CDC moved to create an ethics supervisory board, and regulations were passed to ensure that future studies would have the informed consent of their subjects. Despite the recognition that the study was a grave, fatal mistake, a formal apology to survivors and their families was slow to come. Decades passed between the study’s exposé and President Bill Clinton issuing a formal apology in 1997.
By that time, the survivors of the study were few and far between.
In the end, four of the men from the original study traveled to the White House to hear the apology, along with surviving wives and family members: Herman Shaw, then 94; Carter Howard, 93; Charlie Pollard, 91; and Fred Simmons, 100.
Florine Edwards, daughter of Gary Mitchell, another victim of the study, attended the apology with her mother, who has since died. Edwards says that it was meaningful to be a witness to the official apology but that she could understand why some might not want to attend such an event.
“[The study was] something that left such a bad taste for everybody,” Edwards says. “So the apology just was not something that people jumped up and down to want to be a part of.”
As painful as the memories of the past can be, some descendants are working to make sure that the Tuskegee syphilis experiment is not forgotten. Many descendants of the men in the study are scattered across the United States, but they have the chance to meet at an annual conference for descendants hosted at Tuskegee’s National Center for Bioethics in Research and Health Care.
“Once the shame and blame is resolved then the honor and recognition emerges,” says Dr. Rueben Warren, director of the National Center for Bioethics in Research and Health Care and former director of the CDC Office of Minority Health. “So more and more people are coming out and saying, ‘I’m a family member; that was my great granddaddy.’ But we have to deal with the community pain of the whole study itself.”
It was at one of the annual meetings, in 2014, that Edwards, Head and other study participants’ children, grandchildren and their wives decided to start a nonprofit called Voices for Our Fathers Legacy Foundation.
The last male survivor of the study passed away in 2004, and the last wife infected with the disease died in 2009, according to the CDC. Women like Head and Edwards are some of the few left who can perpetuate a firsthand memory of the experiences their parents endured.
Through the organization, the women hope to reach as many families and descendants as they can, to keep that memory alive and tell their fathers’ untold stories. They hope one day to create a scholarship fund for descendants and to create a more lasting memorial of the study—a garden—somewhere in Tuskegee itself. Partnering with the National Center for Bioethics in Research and Health Care is also a part of their mission. They fear that, without a concerted effort, the study might become a footnote in history books, even for those who are descended from the victims.
“For a lot of families, it was just something you did not talk about,” says Edwards. As a result, some of the younger generations “can’t even say they’re descendants,” she laments.
Joyce Pollard Williams is another board member with Voices for Our Fathers. She makes outreach eff orts to descendants and their families. Occasionally, she says, “People want to know if there’s money in it for them.” Civil rights lawyer Fred Gray filed a class action lawsuit for $1.8 billion in the 1970s. The claim was settled out of court for $10 million. Survivors received approximately $40,000 each. Their wives and heirs received varying, lesser amounts.
So, as Williams says, “There’s no money involved in this. It’s just that this happened to our parents and grandparents, and we [are] just trying to keep this alive.”
Mistrust of medicine
The Tuskegee experiment had a devastating and, in some cases, lethal effect on participants and their families. There were implications for the rest of the nation as well: the study is believed to have contributed to, or at least laid bare, a generalized mistrust of the medical community—with a particular emphasis on clinical research—among the Black community.
Warren puts it another way: “It’s not that African-Americans won’t participate [in clinical trials]; it’s just that they’re more cautious.”
Dr. L’Heureux Lewis-McCoy, an associate professor of sociology in the Colin Powell School for Civic and Global Leadership at the City College of New York, says that certain “myths” have sprung up around the Tuskegee syphilis experiment. For example, a fairly common misconception is that the men were deliberately infected with the disease, as they were in Guatemala. However, that is not the case—the men in Tuskegee already had the disease. They were, however, prevented from ridding themselves of it by being deliberately misled about their conditions.
“What some think happened in Tuskegee is not what happened, but that doesn’t mean that there isn’t a rational reason for concern about the relationship between communities of color and science,” Lewis-McCoy says. “From sterilizations that have [historically] occurred in Puerto Rico [and] North Carolina, to even the ways that access to health care in urban areas is often cut off, there’s a reason that we’re often concerned about how our bodies are treated.”
A number of studies on minority trust in the medical establishment that have been conducted throughout the years lend credence to anecdotes and personal experience. One of the more recent studies, from the University of Pennsylvania’s Population Studies Center, definitively found that minority groups in the United States are less likely than White people to believe that their doctors care about them.
“The system has violated the circumstances around African-American health for years,” Warren says. “So when does the system become trustworthy?”
In an interesting twist of fate, Tyson’s granddaughter, Carmen Head, made her career in public health. She currently works as the director of research, training and education at the American Academy of Child and Adolescent Psychiatry. Her decision to go into public health came from a desire to help others, a value that she says her grandparents, as loving, kind people, inspired in her. Head was close to both her grandparents and grew up in close proximity to them in Connecticut. The family left Alabama for the North in search of better job opportunities in the early 1960s.
Carmen Head recounts one of her grandfather’s favorite sayings, “Sometimes it can only take a few seconds to get into trouble and a lifetime to get out of it.” She adds, “I always think about him saying that in relation to this study. I think about the decision that the researchers made and how much of an impact this has had across generations, and how much of an impact it’s made in clinical care and clinical research.”
As a public health professional, Carmen Head adds, she by no means “mistrusts” clinical trials and research, but is ruefully aware of vulnerabilities in the system. “I recognize that there is the capacity to take advantage of those who are not entirely knowledgeable of certain facts.”
Hopes for a better life
A natural question that arises upon hearing about the study is how it could have gone on so long without someone, somewhere, either discovering or revealing the truth. Part of the problem was that those who were being exploited had no way of finding out the truth. They were living in a time and a place where access to health care was limited, if it existed at all.
In the 1930s, the situation in Macon County was quite dire. The economy, which was dependent on the cash-crop cotton, had been devastated by a panoply of environmental ills and lowered cotton prices. Boll weevils decimated cotton production, a drought continued to wreak havoc and the land itself was reaching a stage of depletion due to cotton farming and soil erosion. Such conditions precipitated a mass migration to the Northern cities, where there were more job opportunities.
But those still living on the land had to make do somehow.
As Lillie Head tells it, her father, Fred Lee Tyson, was in just such a situation: striving to make the best of trying circumstances.
Tyson was a carpenter, the son of sharecroppers. He never had the chance to get much education past middle school. During the mid-1930s, after leaving Little Texas, Alabama, Tyson was hired as a laborer to work on what is now a national forest in Macon County. He helped to build Moton Field, a training base for the Tuskegee Airmen, and later became a fireman at the air field until it closed.
During the late 1940s and throughout the 1950s, carpentry jobs were few and far between in Tuskegee, so Tyson followed the work, traveling to other states during the summer months to take on contract work. His wife worked as a domestic. In Tuskegee, she could expect to make about $6 a week, so she, too, had to resort to traveling far from home during the summer to supplement the family income.
The family quite simply did not have the funds for adequate health insurance. So, as a result, when the doctors associated with the syphilis study offered men in the Tuskegee area semi-free health care, it appeared to be a good deal to families such as the Tysons, despite the stipulations.
“The men wanted better. They wanted better health care,” Lillie Head says. “They wanted to be able [to] provide for their families and they wanted to be as healthy as they possibly could. It was an easy sell, actually, to take advantage of such vulnerable people.”
While the Tuskegee that existed in the 1930s and 1940s is long gone, with its lack of opportunity and stark inequality, inequities in health care persist in multiple forms: between urban and rural communities and along the lines of race and ethnicity.
As James Jones, author of Bad Blood: The Tuskegee Syphilis Experiment, wrote in 1993: “Authorities and medical officials must strive to cleanse medicine of social infection by eliminating any type of racial or moral stereotypes of people or their illnesses. They must seek to build a health system that will make adequate health care available to all Americans. Anything less will leave some groups at risk, as it did the subjects of the Tuskegee study.”
Catherine Morris can be reached at firstname.lastname@example.org.