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Genetic testing that saved a life
The Presidential Commission for the Study of Bioethical Issues dove into the ethics of complete genome sequencing today in San Francisco, and it wasn’t long before they understood the benefits of the technology. They heard a story about how the test saved a life. Retta Beery, the mother of twins Alexis and Noah Beery, recollected […]
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Commission to take up ethics around protecting children in bioterror attack
The chair of the Presidential Commission for the Study of Bioethical Issues announced today the panel has agreed to a US administration request to study ethical questions around safe and effective countermeasures for children following a bioterror attack. Chair Dr. Amy Gutmann, speaking at a Commission session in San Francisco where the panel is discussing […]
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Live from San Francisco
Welcome to the blog for the Presidential Commission for the Study of Bioethical Issue’s public meeting in San Francisco, which opens Thursday and ends on Friday, Feb. 2-3. The meeting will focus on two issues: whole genome sequencing and neuroethics. For a year, the Commission has been following issues surrounding the emergence of the whole […]
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The scars of research done poorly
For much of the meeting, a discussion around protection of human subjects in scientific research was abstract. It became tangible today when Carletta Tilousi, member of the Havasupai Tribal Council in Supai, Arizona, told the story of a diabetes research study involving her tribe to the Presidential Commission for the Study of Bioethical Issues. The […]
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Commission builds database of scientific trials
One basic issue in today’s federally funded research involving human subjects around the world: There’s no single database. Dr. Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues, noted the absence of a database during the second day of meetings, which are examining the […]
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Panel recommends compensation for research injuries
An international expert panel today issued five recommendations to the Presidential Commission for the Study of Bioethical Issues on the effectiveness of current federal rules and international standards for research involving human subjects. One of the five was a recommendation that the U.S. government should implement a system to compensate research subjects for research-related injuries. […]
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Questions and answers on Guatemala research
During today’s meeting of the Presidential Commission for the Study of Bioethical Issues, several key questions were answered about the investigation into the U.S. Public Health Service’s studies in Guatemala from 1946 to 1948 that exposed and infected vulnerable populations to sexually transmitted diseases. Here are some of the questions: Why were they studying sexually […]
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Quotes on Guatemala investigation
Here are some notable quotes from members of the Presidential Commission for the Study of Bioethical Issues. The Commission today focused on the historical investigation of a U.S. Public Health Service research in Guatemala from 1946 to 1948 in which researchers deliberately exposed and infected participants with sexually transmitted diseases. Lonnie Ali, the wife of […]
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The story of Berta
It was just one woman’s story, and that was more than enough for a Commission member to find moral blame. During the Presidential Commission for the Study of Bioethical Issues’ meeting today on the investigation of US researchers deliberately exposing and infecting Guatemalans with sexually transmitted diseases from 1946 to 1948, one member raised the […]
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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 […]
