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

Bioethics Commission Kicks Off Privacy and Progress Webinar Series

The Presidential Commission for the Study of Bioethical Issues (The Bioethics Commission), along with the Genetic Alliance, recently kicked off a new yearlong webinar series. The series is based on The Bioethics Commission’s report, Privacy and Progress in Whole Genome Sequencing. The report 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 secured.”

The first webinar, which took place on February 12, featured Bioethics Commission Associate Director Kayte Spector-Bagdady who gave a broad overview of Privacy and Progress to more than 220 participants. Spector-Bagdady spoke for 30 minutes and offered a synopsis of Privacy and Progress along with a brief history of the Bioethics Commission. Spector-Bagdady said that the first webinar was designed to give a “high level overview of the Bioethical Commission’s report and its process before diving into the recommendations of the report.”

The second webinar in the series, offered on March 12, provided a more detailed analysis and explanation of the recommendations made in Privacy and Progress, and featured Bioethics Commission Senior Policy and Research Analyst Elizabeth Pike. More than 120 participants attended. “Spending time looking more closely at the recommendations allowed us to have a substantive discussion about consent, access, and data sharing. The question and answer portion of the webinar brought up further discussion on topics such as different state laws, protection for individuals, the need for consent, and what that entails,” Pike said. “All the webinars will have a 30 minute question and answer segments, which we hope will allow for thought provoking and engaging conversation,” Pike added.

Pike also previewed the webinars that will be coming up over the next few months; each recommendation in Privacy and Progress will be the focus of a webinar and will be led by various authorities on the issue.

The Genetic Alliance, a nonprofit health advocacy organization, is offering this series of monthly webinars on the second Tuesday of each month at noon. The series began in February and will end in December. All webinars are free and are archived for later viewing. 

The next installment, Strong Baseline Protections While Promoting Data Access and Sharing, will be held on April 9.

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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

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