The blog of the Presidential Commission for the Study of Bioethical Issues

Commission discusses ethical conclusions in Guatemala investigation

For nine months, the Presidential Commission for the Study of Bioethical Issues has investigated a US-funded research project in Guatemala from 1946 to 1948 that deliberately exposed and infected vulnerable people with sexually transmitted diseases. Today, it unveiled some of its findings.

While the Commission will not release its complete findings until next month when it presents a report to President Obama, the Commission members have read a draft report. As Vice Chairman Dr. James Wagner, President of Emory University put it, today’s meeting allowed the public to overhear them “as we talked to ourselves about the report.”

From today’s discussion, these were among the key conclusions:

• The researchers used no informed consent procedures and they deliberately exposed and infected people who were too vulnerable to object: children, patients in mental institutions, prisoners, and commercial sex workers.

• More than 5,500 people in Guatemala were involved in two types of studies – one that took blood and other bodily fluids from participants, and the other that deliberately exposed and infected the participants with sexually transmitted diseases such as gonorrhea and syphilis.

• Experimenters in Guatemala consistently failed to act in accordance “with minimal respect of human rights.”

• The research was sloppily done, marred by poorly thought out protocols and terrible record-keeping.

• The research was ethically objectionable not just by today’s standards, but also by the standards of the time. In 1943, in a study involving prisoners in Terre Haute, Indiana, some of the same researchers fully briefed the prisoners and used informed consent forms.

• The investigators deliberately kept secret its actions from people in the trial as well as the scientific communities in Guatemala and the United States.

The Commission clearly placed the blame on the researchers and doctors involved in the study, including the principal investigator, Dr. John Charles Cutler. “Even more disturbing for us as a Commission is that the blame lies with doctors and medical researchers who carry with them the responsibilities to do no harm,” said Dr. Amy Gutmann, Commission Chair and President of the University of Pennsylvania.
At the start of today’s session – the first of two days of public meetings – Gutmann said the investigation was the right thing to do following revelations last fall about the Guatemala experiments.

“The best thing we as Americans can do when faced with a dark chapter in our history is to bring it to light,” Gutmann said. “We also have called on our sense and sensibility about bioethics and added a careful, unvarnished ethical analysis to the historical investigation. We do this to honor the victims and to make sure this never happens again.”

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2 Comments to Commission discusses ethical conclusions in Guatemala investigation

  1. Yyzgirl's Gravatar Yyzgirl
    August 30, 2011 at 2:54 am | Permalink

    The commission chair says the best we can do as Americans is bring the issue to light, but is that really the best we can do? What about reparations for victims and their families, investigator penalties, agreeing to allow an independent international body to determine if this qualifies as a human rights violation, requiring community oversight of research through community research ethics boards etc.? I hope the commission will weigh in on these and other questions in its Dec report. Also, the US Office of Human Research Protections us considering major changes to regulations for human participants research – is this bring coordinated at all with the commission? They appear to be parallel efforts that should be connected. Thank you.

  2. unchapin's Gravatar unchapin
    September 13, 2011 at 5:50 pm | Permalink

    I am touched by these news today. I am a Guatemalan recently recovered from acute psychiatric illness at a European hospital. I was told that it was one of the best.

    When the U..S. govenment reaches a final answer to this investigation, how about bringing those reparation funds into creating world-class mental health institutions and practices in Latin America.

    I can testify about the ability of modern science to bring back the forgotten, the hopeless, the incurable back to the top of a productive society.

    Guatemala has the double and triple whammy of being punished by war, poverty and drug violence for decades. Now that we are beginning to recover, countless people would certainly benefit by such an approach.

    It is about time that our most vulnerable begin to see the light.

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