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Examining the legacy of deceptive medical experiments

The infamous Tuskegee syphilis experiment

 A woman who discovered a shocking chapter in America’s history of medical experiments will be in Nebraska next week. Susan Reverby is an expert on the infamous Tuskegee syphilis experiments that took place over four decades until 1972. Last year, she became the center of a media firestorm, after discovering those were not the only syphilis experiments the government was conducting. Robyn Wisch spoke with Reverby about the lingering legacy of these medical experiments.
 
“No power on earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish,” announced President Bill Clinton to a room full of survivors, and the families of those passed, of the Tuskegee syphilis studies. It was 1997, and Clinton was speaking at a White House ceremony, apologizing on behalf of the U.S. government. (Click here to read Clinton’s speech in its entirety)
 
“What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful, and I am sorry.”
 
Tuskegee was a program where government physicians studied a group of solely African American sharecroppers who were infected with syphilis. The men were told they were receiving free government healthcare and treatment for their disease. But they weren’t; instead, doctors were studying the progress of syphilis left untreated. Herman Shaw was a survivor of Tuskegee. He died in 1999. But in 1997, just before his 95th birthday, he introduced President Clinton at the White House ceremony.
 
“It has been over 65 years since we entered the program,” Shaw said. “We are delighted today to close this very tragic and painful chapter in our lives.”
 
“The damage done by the Tuskegee study is much deeper than the wounds any of us may have suffered,” Shaw said. “It speaks to our faith in government and the ability of medical science to serve as a force for good.”
 
“I’ve spent nearly two decades telling everybody no one was ever given syphilis by the United States government.” Professor at Wellesley College in Massachusetts, Susan Reverby is an expert on the Tuskegee experiments. She also served on a national council that successfully lobbied Clinton to apologize.
 
“So here I am looking in an archive in Pittsburgh, I’m looking at the papers of a man named John Cutler, who was one of the physicians who worked in Tuskegee in the 60s,” Reverby said. “So I’m looking at his papers thinking maybe I’ll find something on Tuskegee, and I open it up, and there’s this huge unpublished report that says “Inoculation Syphilis,” which means they were giving people syphilis. I almost like fell over.”
 
What Reverby discovered was in the mid 1940s, while Tuskegee had been going on for over a decade, U.S. doctors were infecting Guatemalan prisoners with syphilis to study the effectiveness of penicillin. They used horrific means – paying for infected prostitutes to sleep with them, and if that didn’t work, scraping their genitals and pouring the bacteria into their blood.
 
Reverby presented her findings at a professional meeting in early 2010, but the story went unnoticed. Later, she contacted a colleague, who used to head the Centers for Disease Control, and he prompted the CDC to investigate.
 
“Next thing I knew it was in the White House Domestic Policy Council,” Reverby said. “Then, next thing I heard, the United States government is going to apologize to Guatemala.”
 
President Barack Obama called Guatemalan President Alvaro Colom to personally apologize.
 
“And we don’t usually do that,” Reverby said. “The United States doesn’t ever really apologize for very much to its own people, much less to foreign countries. And so this was just an enormous story. And so once the government had held a short press conference, basically there was nobody else for the press to talk to, except me,” she laughed. “So I became the center of the story. And it got told in this kind of intrepid… girl explorer stumbles into an archive… you know, I feel like there’s a joke in here somewhere that’s going to go, a historian walks into an archive.”
 
But while the story might have sounded like stumbling on buried government secrets, the Guatemalan documents were openly available in a public archive for anyone to see. So how did the information get lost? And does that mean evidence of other experiments may be out there yet to be discovered? How did the government not know about this?
 
“At the time they were doing the study, they knew it was on an ethical edge because of the way they were doing the study,” Reverby said. “And so they kept it somewhat quiet. But it isn’t as if it were being done on an island by a rogue scientist. It wasn’t. It was being done by a government-sponsored scientist.
 
In a 1993 NOVA documentary on PBS, the late John Cutler, one of the government-sponsored scientists, whose papers Reverby was digging through, defended his work – at Tuskegee.
 
“We were dealing with a very important study that was going to have the long-term results of which were actually to improve the quality of health for the black community,” Cutler said. “So that these individuals were actually contributing to the work towards the improvement of the health of the black community, rather than simply serving as merely guinea pigs for the study. And of course I was bitterly opposed to cutting off the study for obvious reasons.”
 
“I think what’s really important is that they were absolutely not mad men,” Reverby said. To understand what happened – how and why – Reverby said we need to understand the context of the times. Racism was part and parcel with the assumptions of medicine, she said. Scientists believed African Americans, and the indigenous people of Guatemala were of a different species. Race was seen as a biological category, and scientists believed diseases manifested differently in people of different races.
 
“These were men who thought that they were doing really good science in the control of a very, very serious and widespread disease,” Reverby said. “They thought that if they had been able to prove that penicillin could be used as a prophylaxis for syphilis, you might be able to get a vaccine made out of penicillin, and they didn’t know yet if that would work, he would’ve won the Nobel Prize.”
 
Reverby will be in Nebraska Nov. 8 to discuss the legacy of the Tuskegee and Guatemala medical experiments at the University of Nebraska-Lincoln. She said she hopes to build understanding for how these experiments occurred, and why. She said her biggest concerns are that people will view the scientists as monsters who could never be like anyone today, or that they’ll view all doctors as monsters, and be afraid to seek healthcare or be involved in scientific research.
 
“If we tell these stories in very melodramatic terms, that is if we think about this as the good guys and the bad guys, or the evil white doctor, and the poor, innocent black people or people of color in another country, we won’t learn anything,” she said.
 
“That’s a much too simple way to think about this.”
 
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