Wellesley's Susan Reverby Unearths Government Research
WELLESLEY, Mass. - Digging in the archives at the University of Pittsburgh, Wellesley College medical historian Susan M. Reverby knew what she found was important enough to keep it *out* of the book she was writing on the history and myths surrounding the infamous Tuskegee Syphilis Study. She did not expect what she finally wrote up to make it to the White House, through the State Department and to Guatemala.
Reverby's book, "Examining Tuskegee," published in November 2009, illuminated the facts and myths about a 40-year, mid-20th-century research project by the U.S. Public Health Service (PHS) that left hundreds of African-American men with late stage syphilis untreated and deceived about their disease.
Once Reverby got around to writing up her historical analysis about a 60-year-old medical research study in Guatemala, undertaken between 1946 and 1948, much to her astonishment the Centers for Disease Control, the National Institutes of Health, the State Department and even the White House all became involved.
What followed was an apology from the highest levels of government. On Friday, Secretary of State Hillary Clinton and Health and Human Services Secretary Kathleen Sebelius offered extensive apologies for actions taken by the U.S. Public Health Service.
"The sexually transmitted disease inoculation study conducted from 1946-1948 in Guatemala was clearly unethical," according to the joint statement from Clinton and Sebelius. "Although these events occurred more than 64 years ago, we are outraged that such reprehensible research could have occurred under the guise of public health. We deeply regret that it happened, and we apologize to all the individuals who were affected by such abhorrent research practices."
(The pre-copy edited article and a synopsis are available on Reverby's Wellesley faculty web page, http://www.wellesley.edu/WomenSt/fac_reverby.html. The U.S. Government's response is online at http://www.hhs.gov/1946inoculationstudy.)
In the Pittsburgh archives, Reverby found a report of a government-sponsored study in Guatemala, led by one of the doctors who later worked on the Tuskegee project, where men and women were purposely given syphilis but, unlike in Tuskegee, were also offered a penicillin cure. However, it appears, not everyone was cured and the research should never have been done this way. "In keeping with the times, there was no individualized informed consent and much deception," Reverby noted.
Too complicated, and off topic, to explain in her book, she held on to these new findings. The subsequent paper and article she wrote on the study in Guatemala, to be published in January in the Journal of Policy History, has generated a major response from U.S. government officials.
After writing the paper delivered at the American Association of the History of Medicine annual meeting last spring, Reverby shared her work with David Sencer, a retired director of the CDC, whom she had interviewed for the Tuskegee book. Recognizing the critical nature of her report, Sencer asked if she would allow current CDC officials to see it ahead of publication. Reverby agreed.
Sensitive to what is now considered inappropriate and immoral research, CDC officials sent a leading syphilis specialist to see the archival material. The subsequent report backed up Reverby's findings. A case review is being organized to see if people involved in the study, and their contacts, are still alive. If so, they may have passed on the disease.
Over the past few weeks, the original report and Reverby's paper made it up the chain of command to the White House. The U.S. government, through the secretaries' offices at the Departments of State and Health and Human Services, has issued a response and are organizing further research. President Obama has been in contact with President Álvaro Colom Caballeros of Guatemala over the findings.
"Professor Reverby's research and paper have done an admirable job in bringing to light an experiment that shouldn't have taken place," Sencer said. "Her scholarship on this issue, and before on Tuskegee, is a call to biomedical researchers that there must be continuous scrutiny of their work. Even while international regulations now exist to make sure what happened in Guatemala could not happen again with American government support, it reminds us that in the past other researchers thought what they were doing was right." In her study, Reverby found many details of the research. The PHS, partnering with Guatemalan health officials and the Pan American Sanitary Bureau in 1946-1948, sent Dr. John C. Cutler to Guatemala to study syphilis transmission, to see if penicillin could be used to prevent syphilis, not just cure it; and to conduct other experiments on what were then called venereal diseases.
Cutler and his team, including Guatemalan physician Juan Funes, induced the disease by allowing inmates in the central penitentiary to have sex with infected prostitutes (which was legal in Guatemala), or gave the disease to the prisoners by inoculating their arms, faces or penises with a solution of the bacteria that causes syphilis. Syphilis is a difficult disease to transfer and cannot grow in a culture so Cutler and his team had to work quickly to make the solutions and inoculations.
"In addition to the penitentiary, the studies took place in an insane asylum and an army barracks," Reverby explains. "In total, 696 men and women were exposed to the disease and then offered penicillin. The studies went on until 1948 and the records suggest that despite intentions not everyone was probably cured."
Worse, the subjects had no idea what they were getting into; moreover, those in charge of the institutions were never really told exactly what was going on.
"At a time when so much medical research is global," Reverby argues, "it behooves us to take account of what has been done in the past by American researchers in other countries and to reconsider always how we gain consent."
More information on Reverby's Tuskegee book can be found at * http://www.examiningtuskegee.com.
Since 1875, Wellesley College has been a leader in providing an excellent liberal arts education for women who will make a difference in the world. Its 500-acre campus near Boston is home to 2,300 undergraduate students from all 50 states and 75 countries.
Related Education News