Presidential Panel Slams 1940s Guatemalan STD Study
Alum’s research leads to international condemnation of experiments
The first sparks of Susan Reverby’s media firestorm were kindled in a warehouse on the outskirts of Pittsburgh in June 2009. Alone at a table, with boxes of archived medical papers from the 1940s, the historian tucked into her research, work that with luck would transform random bits of information into academic revelations.
As it turned out, Reverby (GRS’82), the Marion Butler McLean Professor in the History of Ideas and a professor of women’s and gender studies at Wellesley College, would unearth secrets whose ramifications echoed far beyond the academy. Reading the papers of a U.S. physician, she learned that between 1946 and 1948, the U.S. Public Health Service (PHS) conducted a syphilis-inoculation program on hundreds of prisoners, mental patients, and soldiers in Guatemala. None of the subjects were told the details of the experiments; permission came from the Guatemalan authorities, who may or may not have known what the health service workers were doing.
Reverby shared her findings at a small academic conference, and shortly thereafter with a politically astute colleague who knew that people at the U.S. Centers for Disease Control and Prevention (CDC) would like to know about such atrocities before others did. The first wave of outrage hit on October 1, 2010, the day after President Obama called Guatemala President Álvaro Colom to express his regret. The news vans pulled right up on Reverby’s front lawn.
The second wave hit this week, when the Presidential Commission for the Study of Bioethical Issues released an initial report of its own investigation, ordered by Obama, of Reverby’s research. Describing the Guatemalan experiments as “a very dark chapter in our history,” Amy Gutmann, president of the University of Pennsylvania and the commission chair, stressed the importance of accurately documenting “this clearly unethical historical injustice.”
“We must look to, and learn from, the past so that we can assure the public that scientific and medical research today is conducted in an ethical manner,” said Gutmann. “Research with human subjects is a sacred trust. Without public confidence, participation will decline and critical research will be stopped. It is imperative that we get this right.”
The Washington Post reports that the commission, which reviewed 125,000 documents, learned that the number of Guatemalan men, women, and children drafted into the experiments was much higher than Reverby had believed. At least 5,500 were recruited and more than 1,300 were infected with sexually transmitted diseases. At least 83 people died.
The investigation also found evidence that the researchers knew their actions were unethical. The same researchers who conducted the Guatemalan experiments did similar research with inmates in an Indiana prison. In Indiana, however, prisoners were told the details of the experiments and were asked to volunteer. In Guatemala, the researchers hid the details and never obtained permission from the subjects.
The commission will send a full report to Obama in September and will issue a final report in December.
In the spring of 2009, Reverby was in the last months of research for her second book, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press, 2009). She had spent two decades studying the 40-year U.S. Public Health Service experiment, during which 437 African American men in Alabama with late-stage syphilis were observed but not treated, even after penicillin’s efficacy for the disease had become standard medical practice. Now, Reverby was ready to submit her final manuscript, pack up the boxes of notes and research materials that she had kept for years in her daughter’s bedroom in Cambridge, Mass., and move on to another topic. Maybe something on women’s health? Some of her most enjoyable research had focused on the history of nursing, the subject of her master’s degree thesis from BU.
Reverby was sure she was done with syphilis. But syphilis was clearly not done with her. That historian’s desire for completeness, that last afterthought, and just enough sponsored-research money for a plane ticket from Boston to Pittsburgh brought her to the box with the file labeled “Guatemala.”
Reverby planned to comb through the papers of Thomas Parran, the sixth surgeon general of the United States (1936–48), whose tenure overlapped the Tuskegee study. By now, Reverby had spent years poring over medical records in Macon County, Ala. She had read everything on Tuskegee in the archives in the National Library of Medicine. She’d been to the archives at Johns Hopkins. To make sure that she had turned over every stone, Reverby decided to spend a few days with Parran’s archives at the University of Pittsburgh, where he had been the first dean of the Graduate School of Public Health. Reverby recalled that the papers of John Cutler, a controversial physician associated with the Tuskegee research in the 1960s, were also boxed up at Pitt. Maybe she’d take a look at them, too. “I was just following the leads,” she says. “You just never know. History is always about working with incomplete information.”
As she sat in that warehouse, scanning the index for Cutler’s collected papers, the words jumped out at her: Inoculation—Syphilis. “Flashing red lights,” says Reverby. “I’d spent nearly two decades explaining that there had been no inoculation at Tuskegee, that while the PHS had used deplorable ethics, they had never infected anyone with syphilis. And here it was: in 1946 and over a period of three years, the U.S. government’s health service had deliberately infected 427 Guatemalan men and women, prisoners and mental patients, with syphilis.”
At first glance, Reverby wondered if the Guatemalan research had possibly been a treatment study. Unlike Tuskegee, by the time the Guatemalan research began, PHS doctors knew that penicillin cured syphilis, and the infected subjects were given the drug, although possibly not in the appropriate clinical dose. On a second trip to the archive, Reverby had a much stronger response. “The letters were stunning,” she says. “It was clear that Cutler and Parran weren’t telling anyone what they were doing. Nowhere in the Tuskegee correspondence do you get the doctors saying, ‘This is wrong.’” Cutler’s correspondence clearly revealed secrecy and deception. Both physicians knew the research could not be done in the United States and would be damaging to U.S. interests if it came to light.
Reverby had a nuanced understanding of the historical and strategic contexts for the study. Its probable goal was to create a syphilis prophylactic for U.S. soldiers (much like an antimalarial regimen) to replace the ineffective Pro-Kit used during World War II. And she knew that although the study was shocking, using ill-informed foreign nationals as the experimental subjects for a treatment that would benefit American citizens was not out of the norm for medical research at the time. Plus, Guatemalan prisoners and mental patients presented a “controlled, contained research population” in a fragile state where the U.S. government presumably had significant sway.
“It’s not clear that the Guatemalan government even knew what the PHS was doing,” Reverby says. The ethical parallels were chilling. “It is hard not to think about medical research under Nazis or about much of the drug research still conducted today out of the country on vulnerable populations,” she says.
In academic, rather than activist, mode, Reverby made copies of the relevant letters and of the hundreds of photos of the subjects, and returned to campus to focus on the final draft of her book on Tuskegee. Her notes about the secret inoculations in Guatemala remained in a box until the following spring, when she was asked to give a paper to the 2010 American Association for the History of Medicine conference in Rochester, Minn. “It seemed like a good topic for a quiet academic presentation,” she says.
Reverby was the “last speaker on a Sunday afternoon, in a weekend conference where everyone, including my closest colleagues, had to make at least two connections to fly home,” she recalls. “There were maybe 50 attendees left in the room when I presented.” She remembers “some gasps in the audience, but these are historians. No one rushed out to call the National Enquirer.”
Joel Howell, a professor at the University of Michigan, was in the audience. “Everyone in the room knew that this was something horrific,” he says. “You could tell that she was flabbergasted, amazed. But Susan always has instincts for pathbreaking work. As a scholar, she always goes after the primary source and is never content to take received wisdom.”
In June 2010, a few weeks after the conference, Reverby was putting the last touches on a follow-up article in the Journal of Policy History, an “obscure journal” that she estimates “maybe 30 people ever read.” To ensure that she had all of her medical facts straight, Reverby asked her colleague, David Sencer, a physician and a former head of the CDC in Atlanta, to review it for medical accuracy. Almost immediately, Sencer called her back. “Would you mind if I sent this to the CDC?” he asked. Reverby said, “Oh, David, don’t bother. No one is ever going to read this paper.”
But Sencer knew the article would get publicity. “Better for the government to get out in front of it than to face a hostile press,” he told her. Harold Jaffe, associate director for science at the CDC, took the call. “We knew the study was very bad news, but it was news we had to know,” Jaffe says.
Within a week, Reverby received a call from the CDC. There were lots of questions. She was asked to make sure that all further correspondence on the topic with Sencer be sent to his home address so that it would be sheltered from the Freedom of Information Act. But the CDC didn’t choose to keep the information out of the public sphere. Quickly, the foremost syphilis expert in the CDC, John Douglas, was dispatched to the medical archives in Pittsburgh. He confirmed Reverby’s findings. The alarm moved up the chain of command through the CDC, to the National Institutes of Health and its head of bioethics, to the U.S. Department of Health and Human Services. By mid-July Reverby’s research was at the White House.
Other than a call from a communications specialist at the CDC, Reverby had no idea that the disclosures about the PHS research in Guatemala “would go viral.” But on September 30, 2010, Reverby’s daughter, a senior foreign policy advisor on Capitol Hill, told her, “Mom, this is going to be big.”
Reverby learned from her daughter that Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius were planning to issue a joint apology for the work done more than 60 years before. What Reverby didn’t know is that Obama was also making a call to the president of Guatemala. Or that the government had given the story to NBC science reporter Robert Bazell to break.
“The next morning, all hell broke loose,” Reverby says. “My cell phone. My e-mail. Vans pulling up to the house: NBC, CNN, NPR, the New York Times, the Boston Globe, and the Wall Street Journal. It went worldwide in a nanosecond. Seventeen different reporters from the BBC.” Everyone wanted to interview Reverby, and each reporter hoped for a “visual”—access to the photos of the subjects in the study. When Al-Jazeera and the Iranian state press agency called, Reverby made a fast judgment call. She would not release the photos. For a longtime board member of the American Civil Liberties Union, it was a tough but instinctive reaction. “All I could think of was Abu Ghraib, and the damage that would come from another series of photos with white U.S. hands on dark bodies,” she says.
The story had everything: sex, secrecy, foreign relations, cynicism, and suspicion. It also had righteousness. Unlike the Tuskegee study, where the government spent years denying its 40-year role, this time the response from the top was swift and candid. Still, it took weeks for the media frenzy to quiet. Reverby, who was already occupied with teaching a new fall course at Wellesley, was besieged by requests for interviews and speaking engagements, even before her book, Examining Tuskegee, won the 2010 Ralph Waldo Emerson Prize from the Phi Beta Kappa Society in an unrelated development.
This would be a breathless 15-minutes-of-fame story, an isolated if horrific chapter in American medical history, if the questions raised by the research were not so deadly important, and still so current.
“Yes, clearly, the checks and balances on ethical research are in place today in a way that they were not during the time of the Guatemala study,” says Sencer. “But in the galaxy of medical research, I am sure that abuse still happens.”
Reverby and her peers say the Guatemala experience offers an important window for assessing pervasive, continuing institutional racism in the medical research environment and for questioning the bioethics of experimentation on vulnerable populations—for whom the concept of informed consent may be functionally meaningless.
Both Reverby and Sencer caution against turning the perpetrators into “stick figures.” “It is important not to create Cutler or the PHS system as a monster,” says Reverby. “If you see him as a monster, you miss the point. The point is that bad things happen even when the best men are doing the work.”
“We have to pay attention to what happens when we fool with people’s lives,” Sencer warns, “to keep asking ourselves if we are truly ethical in all aspects. What Susan has done is to look at things in both Guatemala and Tuskegee, not as isolated instances and narrate what happened, but to put them in perspective. She reminds us that despite our efforts to do good, it is not always so.”
Jaffe of the CDC says, “It is tempting to look back at this and simply say, ‘It was a terrible episode’ and go on. But are there other stories that haven’t come to light? We don’t want to feed on the paranoia in the media, for example, of biological warfare, or AIDS as a cooked-up infection in a foreign country, but stories like this have to remind people of those stories. The question we can’t answer is the test of time. If people look back on work we are doing now—and we think we are so careful—will they be equally amazed?”
A version of this article was published in the Winter 2011 edition of Wellesley magazine.1 Comments