Susan Reverby is a historian and professor of women's and gender studies at Wellesley College near Boston in Massachusetts. She is an authority on the notorious Tuskegee experiments, during which treatment was withheld from more than 600 African American men with syphilis. Her recent discovery that the US Public Health Service exposed several hundred Guatemalans to the disease in an undocumented research project in 1946–48 led last week to an official apology from the United States to the Guatemalan government and the promise of a full investigation.
Why did the US government do this research?
By 1946 it was known that syphilis could be cured with penicillin. The primary aim of the study was to look at whether penicillin could also be used as a prophylaxis to get rid of the disease before it established itself in the body. They were looking for something that would be more successful than the 'pro-kits' soldiers had been given during the Second World War, which required them to apply a mercury-based ointment. As you can imagine, there was not a lot of compliance with that approach. They were also interested in whether or not someone could be re-infected with syphilis once cured by penicillin.
The arrangements were set up through Juan Funes, a Guatemalan doctor who had previously trained with the US Public Health Service (PHS) and was then the chief of the venereal disease control division of the Guatemalan Sanidad Publica. Funes and [PHS researcher] John Cutler, who later participated in the Tuskegee experiments, essentially did the study together.
How was the study conducted?
Prostitution was legal in Guatemala, as was bringing in a prostitute for sexual servicing of prisoners in the central penitentiary. They plied some of the prisoners with alcohol and sent in prostitutes whom they knew were infected with syphilis. When not enough infection appeared and they couldn't get enough cases, they made an inoculum. In later tests, they abraded people's bodies — their forearms, cheeks or penises — and applied the inoculum to a piece of cotton or gauze that was held to the abrasion for an hour and a half to two hours. But they had trouble transferring the infection this way, and eventually interest waned. By 1948, the studies were called off. [The US Centers for Disease Control and Prevention (CDC) subsequently found that 427 of 696 subjects were judged to be infected; 369 of those subsequently received "adequate treatment" with penicillin.]
Were these experiments approved?
You can't just walk into the Guatemalan central penitentiary and start doing something like this without someone in charge saying yes. Likewise for the National Mental Health Hospital, where later studies were done. At the mental hospital, Cutler and Funes were able to arrange access by giving the institution things like a projector, and metal plates and utensils. They also provided the anti-epileptic drug Dilantin [phenytoin], because a lot of people in the hospital were actually epileptics and had no medicine to help them control their seizures. That was the trade-off with the asylum keepers.
Was any of this work ever published?
No. In the early 1950s, Cutler was part of a syphilis inoculation project in Sing Sing Prison in New York. That study is published and they make it clear that they asked the permission of the prisoners. They don't reference the Guatemala work. I think they knew it was on an ethical edge. And there were internal questions in the PHS about what they were doing.
But at the time, syphilis was an enormously debilitating disease that health officials were very worried about. They thought they were at war with the disease and they were trying to find things that would help. In a war there are soldiers. I think they saw their subjects as soldiers in that war.
How did you come across all this?
Two years ago, while I was doing research at the University of Pittsburgh, I learned that Cutler, who had taught there, had left papers behind. I asked to see the papers in case there were any documents about Tuskegee I had not already seen. What I found was the Guatemalan material. I was shocked. I could see the papers were talking about inoculations. I've been working on Tuskegee for two decades now and I've spent a lot of time explaining to people that no one was given syphilis in Tuskegee. So you can imagine what it was like to be sitting there reading this. It was just unbelievable.
What happened next?
After completing my book Examining Tuskegee I went back to the University of Pittsburgh in June 2009 and re-did my research on the Guatemalan study to make sure I had it right. I wrote about it in an article that will be published [in the Journal of Policy History] this January. I gave a copy of it to David Sencer, who was the CDC director when Tuskegee broke in 1972 and who I've been in contact with since I interviewed him for the book. He felt this was important and asked if he could take it to people at the CDC. They, in turn, were shocked enough to send a syphilis expert back to Pittsburgh to look at the data. He confirmed what I had found and then it went up the chain of command.
What can today's researchers learn from this?
Most US drug trials are now conducted internationally. We have controls in the United States, but what's being done elsewhere in the world? If the Guatemalan study had been done by a private drug company, I never would have known about it. The lesson for today is the importance of institutional review boards, and of making sure that informed consent is really understood and applied in international trials.
Courtesy – Nature
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