THIS STORY HAS BEEN FORMATTED FOR EASY PRINTING

Wellesley professor unearths a horror: Syphilis experiments in Guatemala

US apologizes for performing unethical study in 1940s

Susan M. Reverby discovered the work while doing research. Susan M. Reverby discovered the work while doing research. (Jonathan Wiggs/Globe Staff)
By Stephen Smith
Globe Staff / October 2, 2010

E-mail this article

Invalid E-mail address
Invalid E-mail address

Sending your article

Your article has been sent.

Text size +

Picking through musty files in a Pennsylvania archive, a Wellesley College professor made a heart-stopping discovery: US government scientists in the 1940s deliberately infected hundreds of Guatemalans with syphilis and gonorrhea in experiments conducted without the subjects’ permission.

Medical historian Susan M. Reverby happened upon the documents four or five years ago while researching the infamous Tuskegee syphilis study and later shared her findings with US government officials.

The unethical research was not publicly disclosed until yesterday, when President Obama and two Cabinet secretaries apologized to Guatemala’s government and people and pledged to never repeat the mistakes of the past — an era when it was not uncommon for doctors to experiment on patients without their consent.

Even so, Reverby found in the files a story of almost singular exploitation and deception, conducted in a foreign land because, the nation’s surgeon general at the time acknowledged, it could not have been done in the United States.

“I was just completely blown away,’’ Reverby said in an interview. “I was floored.’’

In Tuskegee, scientists knew African-American sharecroppers had become infected with syphilis but withheld treatment, in the name of tracking the progression of the disease. In Guatemala, prisoners, soldiers, and inmates in mental asylums were willfully infected, sometimes by using prostitutes provided by the scientists, sometimes by pouring the germs onto skin abrasions the researchers caused.

The US scientists — who had received the blessings of Guatemalan health authorities — were among the leading lights in the field of sexually transmitted disease research. Flush with optimism in the dawning era of antibiotic treatment, they decided to expose vulnerable subjects to further their understanding of the effectiveness of the new drugs in treating sexually transmitted diseases. From 1946 to 1948, they tested their theories on about 1,500 Guatemalans; most who became infected received treatment, but at least one died.

Yesterday, Obama called President Álvaro Colom Caballeros of Guatemala to apologize, and Obama’s spokesman told reporters the experiment was “tragic, and the United States by all means apologizes to all those who were impacted by this.’’

Secretary of State Hillary Rodham Clinton had called Colom Thursday night to break the news to him.

In her conversation with the Guatemalan president, Clinton expressed “her personal outrage and deep regret that such reprehensible research could occur,’’ said Arturo Valenzuela, assistant secretary of state for Western Hemisphere affairs.

The US government has asked the Institute of Medicine, an independent agency that conducts health investigations for Congress, to conduct a review of the experiments. Separately, a presidential bioethics commission will charter an international panel of specialists to explore the current state of medical research on humans around the world and ensure that the atrocities of the past cannot recur.

Any decision about making reparations — financial or otherwise — will await the outcome of the two study panels, officials said.

A representative of the Guatemalan government said his nation will investigate, too — looking in part at the culpability of officials in that country. The records of the experiment suggest that Guatemalan government officials were fully aware of the tests, sanctioned them, and may have done so in exchange for stockpiles of penicillin.

The Guatemalan experiment happened at a time when biomedical research was expanding exponentially, but with a Wild West mentality. In Massachusetts, institutionalized children were fed oatmeal laced with radiation as part of nutrition experiments. In New York, elderly patients were injected with cancer cells.

But in the six decades since the Guatemalan experiment, much has changed in medical research. Now, before scientists can begin any study involving human subjects, their project undergoes review by panels known as IRBs — institutional review boards.

“You can’t believe some of the things people did back then, years ago,’’ said Dr. Anita Barry, top disease tracker at the Boston Public Health Commission. “Now, you’ve got IRBs, thank God — somebody looking over your shoulder making sure you’re doing something reasonable.’’

The discovery by Reverby is testament to doggedness — and serendipity.

She was in Pennsylvania four or five years ago conducting research for her recently released book, “Examining Tuskegee,’’ when she ventured to the archives of the University of Pittsburgh, which sit in an old industrial patch of the city. She was there to examine the records of a US surgeon general who was consumed with controlling syphilis, Dr. Thomas Parran Jr.

That is when she came across files belonging to a deceased researcher named John C. Cutler, who had been involved in the later years of the Tuskegee project.

“I expected to find something on Tuskegee,’’ Reverby recalled. “There was nothing. What he left behind were these records from the Guatemala study. That was all he left behind. Why he did this, I have no idea. Why would you leave this?’’

The more she read, the more dastardly the story turned. Reverby held on to copies of the documents as she labored on her Tuskegee book. Finally, with that tome complete, she returned to the documents on the Guatemala experiments. She first discussed their existence earlier this year, at a meeting of medical historians.

Reverby said she did not publicize her findings sooner because no one was in immediate danger and because, unlike Tuskegee, most of the subjects were treated. “It’s not like I could have stopped something that was happening now,’’ she said.

Arthur Caplan, a specialist in bioethics at the University of Pennsylvania who describes himself as a friend of Reverby’s, said he wishes she had disclosed her findings sooner. “But I also know historians move on a clock that’s slower,’’ he said.

After finishing a research paper describing the experiment, Reverby contacted a former director of the US Centers for Disease Control and Prevention, Dr. David Sencer, who had helped her on the Tuskegee book. “He said, ‘Do you mind if I show it to other people before it’s published?’ ’’ Reverby said.

US government officials were stunned by the contents when shown the paper this summer. The CDC began its own review of Cutler’s papers.

In a synopsis of her paper scheduled to appear in the January issue of the Journal of Policy History, Reverby writes that the Public Health Service embarked on the Guatemalan experiments even as it continued the work in Tuskegee.

The researchers wanted to know whether penicillin could prevent — not just cure — syphilis. They also hoped their experiments would lead to better blood tests and dosing strategies for antibiotics.

Initially, Reverby reports, there was great enthusiasm for Cutler’s work. One federal researcher told him that “your show is already attracting rather wide and favorable attention up here.’’

But the fascination with the Guatemalan experiment was fleeting, in no small part because the results were unimpressive. The physician who supervised Cutler from the home base, according to documents found by Reverby, told the researcher, “I am a bit, in fact more than a bit, leery of the experiment with the insane people. They can not give consent, do not know what is going on, and if some goody organization got wind of the work, they would raise a lot of smoke.’’

Two years after the experiment began, it was ended. The final report was secreted away in Cutler’s papers — along with photos taken by his wife, herself a Wellesley alumna.

Stephen Smith can be reached at stsmith@globe.com.

Susan M. Reverby

Education: Bachelor’s from Cornell University in industrial and labor relations, 1967; master’s from New York University, 1973; doctorate from Boston University in American studies, 1982.

Professional: Professor of women’s and gender studies at Wellesley College; first professor hired in women’s studies in 1982.

Research interests: History of medicine, nursing, and American women; two books on the Tuskegee syphilis study.

Other work: Community organizer in New York and women’s health activist; health policy analyst; consumer representative on the Food and Drug Administration’s Obstetrics and Gynecology Devices advisory panel from 1993-1997; ACLU of Massachusetts board, 1998-2007.

SOURCE: Wellesley College

Connect with Boston.com

Twitter Follow us on @BostonUpdate, other Twitter accounts