The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

US investigation finds efforts to ‘deceive’

Commission members listen to a presentation Mondayat its New York City hearing.

Sometime this summer, the staff of the Presidential Commission for the Study of Bioethical Issues will release its report on the US-funded research study from 1946 to 1948 in Guatemala in which investigators deliberately infected people with sexually transmitted diseases.

Valerie H. Bonham, the Commission’s executive director, gave a sneak preview this morning of the investigation so far. She said the Commission’s staff investigators have found “deeply disturbing” material.

Among the Guatemalans who were intentionally infected by the US researchers:  soldiers, prisoners, mental asylum patients, and sex workers, Bonham said. “Many were intentionally infected with a sometimes life-threatening disease.  The records suggest many were treated, but not all.  No evidence of consent exists and affirmative evidence demonstrates efforts to deceive.”

She gave no further details.

She said her team has reviewed 125,000 records and collected 14,000 records from 13 separate archives, including documents from the National Institutes of Health, the National Academy of Science, the Department of Defense, and the Pan American Health Organization.

Bonham said the US investigation team visited Guatemala two weeks ago to share information with a Guatemala team, which is doing an independent investigation of the US Public Health Service’s work from 1946 to 1948 there.  The Guatemala team hopes to finish its study in a matter of weeks. The US Commission’s investigators also reviewed documents and visited one “public health service” building still standing that was used by the investigators at the time.

Commission Chair Amy Gutmann, president of the University of Pennsylvania, opened  the meeting by thanking the US and Guatemala investigators for their work. Guatemalan Vice President Dr. Rafael Espada was scheduled to speak before the Commission, but he canceled due to the unrest in the country.

“Not to put too fine a point on it, but the egregious treatment of vulnerable populations at the time (in Guatemala) is both stunning and sobering,” Gutmann said.

Gutmann asked Susan Reverby, a professor of women’s studies at Wellesley College in Massachusetts, who was sitting in the audience, to give her short opening thoughts about the investigation. Reverby’s discovery of the US-funded study in Guatemala last year led to the investigations.

Reverby made two points:

One was not to be swayed by conspiracy theorists, and to stick to “what had happened.” She said the Commission should be prepared and acknowledge that other narratives about what happened also will circulate. She said she hoped the investigation would help explain that the lead investigator, John Cutler, “was not necessarily a rogue” but believed he was doing proper research under the standards of the time.

The second point was that she said she also hoped her discovery would not “make people afraid” to participate in future clinical trials. She said the medical research studies were “incredibly valuable” in discovering drugs and therapies that save lives.

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About blog.Bioethics.gov

This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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