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Privacy Webinar Series

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What about Privacy and Progress in Whole Genome Sequencing?

2013 Webinar Series


The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it 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”. In their words: “As the scientific community works to bring the cost of whole genome sequencing down from millions per test to less than the cost of many standard diagnostic tests today, the Commission recognizes that whole genome sequencing and its increased use in research and the clinic could yield major advances in health care. However it could also raise ethical dilemmas. The Commission offers a dozen timely proactive recommendations that will help craft policies that are flexible enough to ensure progress and responsive enough to protect privacy.”

Many people contributed to this report over a year. The committee worked hard to distill a great deal of information into a cohesive set of recommendations. It is important that this information be disseminated, discussed and built upon. This year-long series will use the report structure as the basis for discussion. We’ll explore each recommendation, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy.

Genetic Alliance offers this series of monthly webinars, on the second Tuesday of each month at noon, beginning in February 2013 and ending in December. All webinars are free of charge and are also archived for later viewing. In general, the webinars will last one hour and leave ample time for questions and answers.

If you are interested in learning more about whole genome sequencing and privacy laws, you can find informative articles and resources here.

Co-Sponsored by:

Summary of the report
Part A (February 12):  PowerPoint Presentation | Webinar Recording
Part B (March 12): PowerPoint Presentation | Webinar Recording

Recommendation 1 – Strong Baseline Protections While Promoting Data Access and Sharing (April 9): Webinar Recording

Recommendation 2 – Data Security and Access to Databases (May 14): 
Latanya Sweeney: | Dixie Baker: PowerPoint Presentation | 
Yaniv Erlich: PowerPoint Presentation | Webinar Recording

Recommendation 3 – Consent (June 11):  
Amy McGuire : PowerPoint Presentation | Susan Wolf: PowerPoint Presentation | John Wilbanks: PowerPoint Presentation | Webinar Recording

Recommendation 4 – Facilitating progress in whole genome sequencing (July 9):
Paul BillingsLaura Rodriguez | Webinar Recording

Recommendation 5 – Public benefit (August 13):
Retta Beery | Pilar Ossorio | Ron Whitener | Webinar Recording

Conclusions | (September 10):

Lisa M. Lee | Kelly Edwards | Webinar Recording

Technology: Is a deeper dive needed? | (October 8):

Mathews | Shelton | Erlich | Webinar Recording

Ancestry and WGS: other privacy concerns? (December 10):

Ken Chahine | Jennifer Wagner | Webinar Recording



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