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

Posts in category: Whole Genome Sequencing

NIH Requests Comment on Genomic Data Sharing Policy Draft

Last month, the National Institutes of Health (NIH) published a draft version of its new genomic data sharing policy, along with a request for public comment. The draft policy parallels some of the concepts and recommendations discussed in the Presidential Commission for the Study of Bioethical Issues’ (Bioethics Commission) 2012 report: Privacy and Progress in […]

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Bioethics Commission Executive Director Featured on Genetic Alliance Webinar

The Genetic Alliance recently posted a webinar featuring Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) Executive Director Lisa M. Lee. The webinar examined some of the ongoing and timely issues raised by to the Bioethics Commission report Privacy and Progress in Whole Genome Sequencing. Lee was joined by Kelly Edwards, Acting Associate […]

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Member Spotlight: Raju Kucherlapati

“Growing up, I thought of the United States as a shining beacon of hope. I came here as a nobody, but this country has given me so much,” Raju Kucherlapati, Ph.D., said. President Obama appointed Kucherlapati to the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) in April 2010 because of Kucherlapti’s […]

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Privacy and Progress and the Deidentification of Whole Genome Sequence Data

In the most recent issue of the Hastings Center Report, Drs. Amy Gutmann, and James Wagner of the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission), contributed to the lively debate surrounding the identifiability of genetic data. In Found Your DNA on the Web: Reconciling Privacy and Progress, Gutmann and Wagner, Chair […]

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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 […]

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Privacy and Progress Inspires California Genetic Information Privacy Bill

In February 2013, California State Senator Alex Padilla introduced a bill declaring the intent of the legislature to enact new, comprehensive genetic privacy protections in the state.  Senate Bill 222 explains that existing law protects genetic privacy in some ways, but suggests that additional legislation is needed to provide individuals with comprehensive protection. For example, […]

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New HIPAA Guidance on De-Identification

On November 26, 2012, the Office for Civil Rights (OCR) within the Department of Health and Human Services released new Guidance on De-identification of Protected Health Information. The new Guidance provides covered entities—defined as certain health care providers, health care clearinghouses, or health plans—with specific tools and techniques for de-identifying health information using the two […]

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Considering Opt In vs. Opt Out Consent Procedures in WGS Research

When it comes to whole genome sequencing research, consent procedures can be complex, especially for the patient. Some patients could be unaware that their whole genome sequence data might be used in future research without additional consent. To highlight the issue, consider this hypothetical example: After a painful gallbladder attack, 27-year-old Cindy allowed surgeons to […]

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Executive Director Lisa M. Lee Presents “Privacy and Progress” at Personalized Medicine Conference

Presidential Commission for the Study of Bioethical Issues Executive Director Lisa M. Lee, Ph.D., M.S., presented the Commission’s recent report, Privacy and Progress in Whole Genome Sequencing at the 8th Annual Personalized Medicine Conference at the Harvard Medical School in Boston. The conference, held November 28-29, is organized by Harvard Medical School, Harvard Business School, […]

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Commission Member Anita Allen Presents “Privacy and Progress” at Cold Spring Harbor Laboratory Meeting

Presidential Commission for the Study of Bioethical Issues Member Anita Allen, J.D., Ph.D., presented the Commission’s most recent report, Privacy and Progress in Whole Genome Sequencing, to a key audience of clinicians and scientists whose work involves the very technology the report addresses. Allen’s presentation was part of an Ethics Panel at the Cold Spring […]

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About blog.Bioethics.gov

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.