What about Privacy and Progress
in Whole Genome Sequencing?A Year-Long Webinar Series Registration is free: http://www.geneticalliance.org/webinars
Missed a webinar? Check http://www.geneticalliance.org/webinars.archive for recording 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”. 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.” 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. Recommendation 1 – Strong baseline protections while promoting data access and sharing
April 9, 2013 12:00 pm - 1:00 pm EDT Moderator:
Lynn Dressler - Director of Personalized Medicine, Mission Health Systems Presenters:
Barbara Koenig - Professor of Medical Anthropology & Bioethics, Department of Social & Behavioral Sciences, Institute for Health & Aging; and Department of Anthropology, History, & Social Medicine, UCSF
Deven McGraw - Director of the Health Privacy Project, Center for Democracy & Technology * * * Recommendation 2 – Data security and access to databases
May 14, 2013 12:00 pm - 1:00 pm EDT Presenters:
Latanya Sweeney - 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
Yaniv Erlich - Principal Investigator, Whitehead Fellow, Whitehead Institute for Biomedical Research * * * Recommendation 3 – Consent
June 11, 2013 12:00 pm - 1:00 pm EDT 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
John Wilbanks - Founder, Consent to Research, Senior Fellow, Kauffman Foundation, Research Fellow, Lybba * * * Recommendation 4 – Facilitating progress in whole genome sequencing
July 9, 2013 12:00 pm - 1:00 pm EDT 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, Division of Policy, Communications, and Education, National Human Genome Research Institute * * * Recommendation 5 – Public benefit
August 13, 2013 12:00 pm - 1:00 pm EDT 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 12:00 pm - 1:00 pm EDT 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 12:00 pm - 1:00 pm EDT Presenters:
Debra JH Mathews - Assistant Director for Science Programs,
Berman Institute of Bioethics,
Assistant Professor, Pediatrics, Johns Hopkins University
Robert Shelton - CEO, Private Access
Yaniv Erlich - Principal Investigator, Whitehead Fellow, Whitehead Institute for Biomedical Research * * * Are privacy requirements in WGS different in various contexts: lifecourse differences, severity of disease, nonmedical uses?
November 12, 2013 12:00 m - 1:00 pm EST 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 12:00 pm - 1:00 pm EST 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 | 