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

Tune in Monday: Live coverage of Bioethics Commission

Here’s a heads up that we’ll be live blogging starting Monday at the sixth public meeting of the Presidential Commission for the Study of Bioethical Issues.

The two-day meeting , which will be held in Washington, D.C., is expected to cover issues surrounding the investigation into the revelations last October that researchers sponsored by the U.S. Public Health Service exposed and infected vulnerable populations in Guatemala with sexually transmitted diseases from 1946 to 1948.

During the first day, which starts at 1 p.m., the Commission will discuss key findings as Members refine their conclusions about the historical investigation of what happened in Guatemala during those human subject studies. The final investigation will be delivered to President Obama in early September.

The Commission is expected to talk about issues such as: Why were vulnerable populations targeted? Was this considered good science at the time and did the researchers actively work to keep it secret? And were ethics rules of the time violated?

Guatemala Vice President Rafael Espada, M.D, who is leading Guatemala’s independent investigation into the 1940s studies, was expected to address the Commission on Monday. But he canceled on Friday due to the approach of Hurricane Irene. The Guatemala study has not been released to date.

President Obama asked the Commission for two reports: One was to examine what happened in Guatemala during the 1940s study; while the second is to review contemporary standards that protect people who are participating in research. That report is due in December.

On Tuesday, the discussion shifts to review contemporary standards for trials involving human subjects.

First, the Commission will receive recommendations from the International Research Panel, which was formed to consider the effectiveness of current federal rules and international standards governing human subjects research. That panel met three times.

Second, the Commission will hear from Ezekiel J. Emanuel, M.D., Ph.D., the former chief of the Clinical Center Department of Bioethics at the National Institutes of Health. Emanuel is expected to talk about last month’s announcement by the U.S. Department of Health and Human Services that it is considering various ways of enhancing the regulations overseeing research on human subjects. The changes under consideration can be found in an Advance Notice of Proposed Rulemaking (ANPRM).

In addition, the Commission will hear from several experts on the need to actively involve the community before and during these trials. Among those set to speak are Carletta Tilousi, a member of the Havasupai Tribal Council; Mitchell Warren, executive director of AVAC; and Roger I. Glass, M.D., Ph.D., director of the Fogarty International Center at NIH.

The meeting will be live-streamed and archived on the Commission website at Transcripts will be posted on the website after the meeting.

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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

Learn more about the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues.