Posts in category: Uncategorized
The Commission’s at ASBH
The Bioethics Commission is at the American Society of Bioethics and Humanities (ASBH) 14th Annual Meeting in Washington, D.C. October 18-21. The theme of this year’s meeting is “Representing Bioethics.” Between staff, Members, and advisors, the Commission will be represented at several different sessions at ASBH. For example, on Friday, October 19 at 8 a.m. Executive Director [...]
Commission Releases Report on Genomics and Privacy
The Presidential Commission for the Study of Bioethical Issues today released its report concerning genomics and privacy. The report, Privacy and Progress in Whole Genome Sequencing, concludes that to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and [...]
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 [...]
Ethically Impossible
From 1946-1948, a team of medical researchers in the United States Public Health Service intentionally infected more than 1,300 Guatemalan prison inmates, psychiatric patients, commercial sex workers and soldiers with sexually transmitted diseases. The team also used children in diagnostic testing. Done completely without consent, their experiments resulted in a living hell for many of [...]
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 [...]
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 [...]
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. [...]
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 [...]
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 [...]
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 [...]
