From the great folks at Genetic Alliance:

What about Privacy and Progress in Whole Genome Sequencing?

A Year-Long Webinar Series
Registration is free: http://www.geneticalliance.org/webinars

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.

Part A – Summary of the report
February 12, 2013

Presenters:
Kayte Spector-Bagdady – Associate Director, Presidential Commission for the Study of Bioethical Issues
Discussant (TBA)

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Part B - Summary of the report
March 12, 2013

Presenters:
Elizabeth Pike – Senior Policy and Research Analyst, Presidential Commission for the Study of Bioethical Issues
Discussant (TBA)

* * *

Recommendation 1 – Strong baseline protections while promoting data access and sharing
April 9, 2013

Presenters:
Deven McGraw – Director, Director of the Health Privacy Project for the Center for Democracy & Technology

* * *

Recommendation 2 – Data Security and Access to Databases
May 14, 2013

Presenters:
Latanya Sweeney – Ph.D., Visiting Professor and Scholar, Computer Science Director, Data Privacy Lab, Harvard University (invited)
Dixie Baker – Senior Partner, Martin, Blanck, and Associates LLC; Chair, Privacy and Security Workgroup, Health Information Technology Standards Committee, Office of the National Coordinator

* * *

Recommendation 3 – Consent
June 11, 2013

Presenters:
Amy McGuire – Associate Professor of Medicine and Medical Ethics, and Director of the Center of Medical Ethics and Health Policy at Baylor College of Medicine
Susan Wolf – McKnight Presidential Professor of Law, Medicine & Public Policy, Faegre Baker Daniels Professor of Law and Professor of Law & Medicine at the University of Minnesota Law School, Professor of Medicine at the University of Minnesota Medical School (invited)
John Wilbanks – Founder, Consent to Research, Senior Fellow, Kauffman Foundation, Research Fellow, Lybba

* * *

Recommendation 4 – Facilitating progress in whole genome sequencing
July 9, 2013

Moderator:
Debra JH Mathews – Assistant Director for Science Programs?, Berman Institute of Bioethics,? Assistant Professor, Pediatrics, Johns Hopkins University

Presenters:
Paul Billings – Medical Director, Life Technologies
Stephen Friend – President & CEO, Sage Bionetworks
Laura Rodriguez – Director of Policy Office, National Human Genome Research Institute, National Institutes of Health, HHS

* * *

Recommendation 5 – Public benefit
August 13, 2013

Presenters:
Retta Beery – Patient Advocate, The Beerys Dystonia Support Site
Pilar Ossorio – Associate Professor of Law and Bioethics at the University of Wisconsin at Madison (invited)
Ron Whitener – Director, Tribal Court Criminal Defense Clinic, Executive Director, Native American Law Center, Senior Law Lecturer at University of Washington School of Law

* * *

Conclusions
September 10, 2013

Presenters:
Lisa M. Lee – Executive Director, Presidential Commission for the Study of Bioethical Issues
Kelly Edwards – Acting Associate Dean, Associate Professor, Bioethics & Humanities, University of Washington

* * *

Technology: Is a deeper dive needed?
October 8, 2013

Presenters:
Debra JH Mathews – Assistant Director for Science Programs, ?Berman Institute of Bioethics,? Assistant Professor, Pediatrics, Johns Hopkins University
Robert Shelton – CEO, Private Access

* * *

Are privacy requirements in WGS different in various contexts: lifecourse differences, severity of disease, nonmedical uses?
November 12, 2013

Topics (more to be added as they emerge during the webinars):
Newborn screening and WGS • Diagnostic odyssey • Risk assessment for the consumer

* * *

Ancestry and WGS: other privacy concerns?
December 10, 2013

Presenters:
Ken Chahine – Senior Vice President and General Manager, DNA, Ancestry.com
Charmaine Royal – Associate Research Professor, Department of African & African American Studies, Duke Institute for Genome Sciences & Policy