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March 31, 2011

Historian’s research at Pitt prompts presidential apology

How does a historian get an American president to apologize to the government of another nation?

“It’s not something that normally happens to historians,” quipped Susan Reverby, a Wellesley College faculty member who studies the history of American health care, gender and race issues.

Susan Reverby

Susan Reverby

But Reverby’s research, conducted in Pitt’s archives, set in motion a chain of events that did just that.

Her findings also provided the impetus for a March 24 symposium on campus, sponsored by the Graduate School of Public Health (GSPH) and the Pitt Center for Bioethics and Health Law.

Reverby discovered former Pitt professor John Cutler’s documentation of his 1946 study in which American doctors, without subjects’ permission, infected Guatemalan prisoners, mental hospital patients and soldiers with syphilis to study treatment of the disease.

Reverby’s work, presented at a meeting of the American Association for the History of Medicine in May 2010 and later published in the Journal of Policy History, drew widespread media attention, launched an information page on the U.S. Health and Human Services (HHS) web site, www.hhs.gov/1946inoculationstudy, and ultimately culminated in a government apology.

On Oct. 1, President Barack Obama phoned Guatemalan President Alvaro Colom to apologize; Secretary of State Hillary Clinton and HHS Secretary Kathleen Sebelius issued a joint statement labeling the research practices “unethical” and “abhorrent.”

Obama also ordered the chair of the Presidential Commission for the Study of Bioethical Issues to review the syphilis study and make a report on current regulations and standards for protecting human subjects in government-supported research.

That report is expected this summer, Reverby said.

At the time of the Guatemalan experiments, Cutler was a young doctor with the U.S. Public Health Service (PHS). He joined the Pitt faculty in 1967 and donated his papers to the University when he retired from Pitt in 1993, GSPH Dean Donald Burke said in his opening remarks.

Reverby, a historian of the infamous Tuskegee syphilis study, came to Pitt’s archives in the mid-2000s to do research for a book on the Tuskegee research. Cutler, as a PHS doctor in the 1950s and 1960s, was involved in the Tuskegee study, in which African-American men who had syphilis were left untreated while doctors observed the disease’s effects.

Cutler appeared in a 1993 PBS documentary, “Deadly Deception,” in which he explained why the Tuskegee study was done. “In that film,” Reverby said, “he does not apologize for the study; he explains why they hid it and why it was important. He’s a kind of visible figure in the Tuskegee story, which is why, in fact, I as a historian of the study came to Pittsburgh.”

Reverby said she has worked to dispel the mistaken notion that doctors infected subjects in the Tuskegee studies, and was surprised when Cutler’s papers brought to light the research in Guatemala in which subjects intentionally were given the disease. “I’ve spent 20 years of my life saying to people nobody was [intentionally] infected in Tuskegee and I open up this box sitting in your archives — and here is this inoculation study and it’s Cutler,” she said.

The papers documented a two-year study in which subjects in Guatemala were infected with syphilis. Researchers paid for infected prostitutes to service prisoners — such visits were legal at the national prison — and other subjects were inoculated with the disease.

Reverby was forced to drop the Cutler information from her book when editing it for length, but remained interested “because it was Cutler and because it involved someone who had been involved in Tuskegee,” Reverby said. “I came back here in June 2009 to look at the papers again, to really go through this more thoroughly, and spent five days here in the archive.”

She presented her findings at the history of medicine association meeting last spring and, in the course of fact-checking her research for publication, sent a copy to David Sencer, former director of the Centers for Disease Control and Prevention (CDC). Sencer had chaired a 1969 meeting in which it was decided to continue the Tuskegee study, she said. “I had interviewed him; we’d gotten to know each other, and in one of the interviews, he said, ‘I don’t know why people would think we would have infected people in Tuskegee,’ and I said to him, ‘Well, there’s Guatemala.’” She promised to send him her paper on it when he professed little knowledge of the study beyond rumors about the involvement of prostitutes.

Reverby recounted that she was seeking confirmation that her medical facts about syphilis were correct.  Sencer, however, recognized the potentially explosive nature of the discovery. “David’s laughing response to me was, ‘You’re worried about the facts? That’s the least of the problems with this paper,’” she said.

At his request, she sent the paper to the CDC prior to publication, where it started to go up through the ranks. “Then it became clear this was a much bigger story than I’d realized,” Reverby said. At CDC’s request, she provided copies of her notes.

John Douglas, head of CDC’s sexually transmitted disease prevention division, was dispatched to Pittsburgh to review the original materials with GSPH’s Burke.

Reverby said: “I held my breath because my paper had already been refereed by historians, but now the country’s leading syphilologist was going to figure out whether or not I had done this right, along with the dean of your public health school.”

She worried that she might have misinterpreted the documents and was relieved when they agreed she was correct.

Douglas’s staff at CDC analyzed the data. Reverby’s work and Douglas’s  analysis  “started  to  go up the chain of command at CDC and the National Institutes of Health, to HHS, the State Department and the White House,” Reverby said.

She agreed to post the paper, “‘Normal Exposure’ and Inoculation Syphilis: A PHS ‘Tuskegee’ Doctor in Guatemala, 1946-48,” on her faculty web page.

What she didn’t know, however, was that the feds had tipped off NBC science reporter Robert Bazell the night before on an embargoed basis.

Almost immediately after she’d posted the paper, a friend commented on the work via email. “How can you know this? It’s two minutes later,” she asked. Her friend replied, “It’s all over the Internet.”

Then came Bazell’s call. “Suddenly, NBC News, and then the world, was in my house in Cambridge,” she said.

The story continues to make news. A class action lawsuit was filed March 14 in federal court in Washington, D.C., against several government agencies on behalf of the Guatemalan research subjects and their heirs.

And, the papers, including approximately 12,000 pages of correspondence, reports, photographs and patient records, were posted this week at www.archives.gov/research/health/cdc-cutler-records.

According to a National Archives press release, in September Pitt asked the government to take possession of the Cutler materials. The collection was transferred to the National Archives in Atlanta last October.

So why all the attention? “The details are relatively gruesome. … It involves sex. It fits the trope of a grade-B horror movie where the intrepid explorer has stumbled on this find in the archives of Pittsburgh,” Reverby said.

“There is the underlying mistrust of medical research and the government’s power — particularly when combined,” she said, “and especially given imperialism, when the U.S. goes outside its borders.”

The issue remains fresh because “we’re in a historical time in which more than 50 percent of our research now is done overseas,” she said.

Reverby said she struggles against those who would paint Cutler as a monster. “I think it’s really important to remember that Cutler and his colleagues thought they were doing really good science against a really dreadful disease. I think it’s incredibly dangerous to see Cutler as a monster like [Nazi doctor Josef] Mengele and not understanding broader institutional support for what he was doing,” she said.

—Kimberly K. Barlow


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