The blog of the Presidential Commission for the Study of Bioethical Issues

Posts in category: Whole Genome Sequencing

Promoting “Privacy and Progress” at APHA

After returning from the American Society for Bioethics and Humanities (ASBH) annual meeting in Atlanta last week, Kayte Spector-Bagdady, Associate Director at the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission), is gearing up for another presentation at the American Public Health Association (APHA) meeting in Boston this week. As part of the [...]

See you at APHA in Boston

The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) will be participating in the 141st Annual Meeting and Exposition of the American Public Health Association in Boston, Mass. We look forward to seeing you at the following sessions: Panel Session – Enumerating Ethical Considerations of Medical Countermeasure Research with Children (3442.0) at [...]

See you at ASBH in Atlanta

The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) will be participating in the American Society for Bioethics and Humanities (ASBH) 15th Annual Meeting in Atlanta, Ga. We look forward to seeing you at the following sessions: Plenary Session, Friday, 9:15 a.m. A Conversation with Amy Gutmann, Chair, Ph.D., Presidential Commission for [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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, [...]

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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