The Tuskegee Experiment: How Leading Researchers Are Rebuilding The Black Community’s Trust In Medicine
For Dr. David Hodge, calling it “the Tuskegee Experiment,” or even its official name, “The Tuskegee Study of Untreated Syphilis in the Negro Male” is an unequivical misnomer.
The Senior Associate Director of Education for the National Center for Bioethics in Research and Healthcare at Tuskegee University says it leads people to believe that the 40-year study in which U.S. government doctors denied treatment to Black men infected with syphilis in Macon County, Ala., was directly connected to the town of Tuskegee or the then-Tuskegee Institute, an HBCU.
The truth is that the entire effort was the idea of the U.S. Public Health Service administrators who were looking to find out how syphilis ravaged Black bodies as opposed to White ones. Thus, the name as the Centers for Disease Control regards it: The U.S. Public Health Service Syphilis Study.
“The naming of the [study] is extremely important because each generation has its perspective, said Hodge, “and we want to make sure we correct the next generation’s perspective and name it correctly.
Still, the John A. Andrew Memorial Hospital, which sat on Tuskegee’s campus during the time of the study between 1932 to 1972, was where it was centered. Today, the location is far removed from what went on at the time and has a new identity and mission. The building now houses the National Center for Bioethics in Research and Healthcare.
The center opened in 1999, two years after a formal apology from President Bill Clinton over the study and the damage it did. It was funded with an initial government grant of $200,000, and has received as much as $20 million from the government and other sources. It is now charged with leading the conversation around treating Black people and other underserved communities and where moral issues intersect.
“We have to find the line between public health, which is population-based and bioethics, which is personal-based,” said Hodge. “To walk that line without skirting one for the other is tough.
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Where Bioethics Fits Into The Conversation
Bioethics as a term, preceded the founding of the center, but Hodge says it’s his responsibility to put the conversation about where it intersects with treatment of African Americans and other marginalized people into general discussion, given the high rates in health disparities for those communities.
“Because for example, the pandemic, is that a public health issue? Of course, yes.,” Hodge explained. “Is it a bioethical issue? Well, when you get down to the level of the vaccine, it becomes a bioethical conversation. I'm the lead ethicist, so my challenge is trying to figure out how to ground the National Center in such a way that is an advantageous position to reflect both public health policies and advocate for public health policies.”
Hodge says the center’s Bioethics Honors Program has about 95 students who meet with their instructors to create projects around public health or community service. A secondary meeting is led by Hodge, the center’s director Dr. Reuben Warren or sometimes a guest lecturer on a bioethics issue. Recently, one of the most important topics has been the Roe v. Wade reversal by the Supreme Court, along with the problems of maternal mortality in the Black community. Students and faculty will continue to lead conversations around these topics through presentations in the fall semester at the center.
When It’s Time To Question History
There is still the question of how the center relates to the past and the university’s link to the syphilis study. It continues to come up and many ask whether the institution should have a level of culpability in what happened to those men and their families.
While the school actually had little to do with the study, Dr. Eugene Dibble, who was head of John A. Andrew Memorial Hospital at the time, was seeking ways to get better training for hospital staff , thinking that participating in the study would provide that opportunity. The debate of whether or not Dibble and others at the hospital were complicit in what happened to the participants has lingered for years, although experimenting on these men without their consent was an idea solely constructed by the USPHS.
When Hodge started his position at the center in 2017, he met Dibble’s daughter, which prompted him to ponder this debate once again. “I was thinking to myself, how should history greet her? We have a similar question, with Nurse [Eunice] Rivers. How should history treat them? One way to frame Dr. Dibble and Eunice Rivers is to say what would happen if they weren’t there…we have no idea what they prevented or what they stopped or what they halted.
“We know to a certain extent they were trying to be advocates,” Hodge explained. “But you just have to wonder how in the world could they have been there? How in the world do you think this is acceptable for 40 years?”
Interestingly enough, Hodge says he doesn’t hear much negativity about Dibble or Rivers’ roles in the travesty. “They were two people among others who were in a difficult position and they had to try to figure out how to get it done.”
Clearing The Air
The study has been known for years as a leading reason for mistrust of the medical field in the Black community. It’s not lost on Hodges that this has had an impact, but he also recognizes his responsibility to change hearts and minds by sifting through misinformation on the coronavirus pandemic.
“During the height of the COVID pandemic, there was every day, someone, somewhere, sometimes six times a day Tuskegee was mentioned when they talked about hesitancy. But the syphilis study was about the effects of untreated syphilis in the Negro male of Macon County. The vaccine is about treating the COVID pandemic in everybody. In that regard, it was diametrically opposite situations and they should never be held in the same conversation.
“Secondly, the high incidence of COVID deaths initially and continually among Black people had more to do with the United States’ public health program that seems and continues to be silent on the social determinants of health that affect Black people,” he continued. “If you have a Black community like Liberty City in Miami, or West Atlanta, or Bedford-Stuyvesant in Brooklyn, or any Black community where poverty lurks, you’re going to have the effects of poverty which includes low health care. If you drop a pandemic on it, guess what's going to happen? They're gonna die at a faster rate.”
The possibility of repeating an ugly history
Looking at the syphilis study issue in retrospect, it is often asked if something like this could happen again. Most would say no. In 1974, the National Research Act became law, which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Regulations were also passed that year that require informed consent for any study done or funded by the U.S. Department of Health, Education and Welfare or any linked agency.
Hodge, however, remains skeptical about a repeat of the study being impossible. “Who the heck would have thought Donald Trump was possible,” he said. “Who would have thought January 6th could have happened? There are places in this world where we don’t have the regulations the United States may have and therefore they too are just as susceptible. The point is I am not optimistic that it can’t happen here. I’m not pessimistic either. I’m hopeful, though.”