Appendix A
Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys

November 17–19, 2008


The Keck Center of the National Academies

500 Fifth Street NW

Washington, DC


November 17, 2008—Room 100

8:30–8:45 am

Welcome and Opening Remarks

 

NRC representative

Bob Hauser, Committee chair

Richard Suzman, NIA

  • Background and purpose

  • Goals of the workshop

  • Sponsor perspective

 

SESSION 1: Overview

 

Session Chair: Bob Hauser, University of Wisconsin

8:45–9:05

Data Access Versus Confidentiality: Balancing Risks and Benefits

 

Ellen Wright Clayton, Vanderbilt University

9:05–9:25

Where Are We Now? Where Do We Want to Go?

 

George Church, Harvard University

9:25–9:45

Overview of Biobanks and Data Harmonization

 

Jennifer Harris, The Norwegian Institute of Public Health, Oslo, Consultant to NIA, NIH



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OCR for page 93
Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys November 17−19, 2008 The keck Center of the National Academies 500 Fifth Street NW Washington, DC November , 00—Room 00 8:30–8:45 am Welcome and Opening Remarks NRC representative Bob Hauser, Committee chair Richard Suzman, NIA • Background and purpose • Goals of the workshop • Sponsor perspective SESSION 1: Overview Session Chair: Bob Hauser, University of Wisconsin 8:45–9:05 Data Access Versus Confidentiality: Balancing Risks and Benefits Ellen Wright Clayton, Vanderbilt University 9:05–9:25 Where Are We Now? Where Do We Want to Go? George Church, Harvard University 9:25–9:45 Overview of Biobanks and Data Harmonization Jennifer Harris, The Norwegian Institute of Public Health, Oslo, Consultant to NIA, NIH 

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 CONDUCTING BIOSOCIAL SURVEYS 9:45–10:45 Discussion 10:45–11:00 Break SESSION 2: Risks and Rewards of Data Linking Session Chair: Hank Greely, Stanford University 11:00–11:20 Risks and Rewards Katherine Mullan Harris, University of North Carolina 11:20–11:40 Legal and Ethical Issues in Using Biological Data and How They Differ from Social Science Data Barbara Koenig, Mayo Clinic, University of Minnesota 11:40–12:30 pm Discussion 12:30–1:30 Lunch SESSION 3: Storing and Maintaining Biological Data Session Chair: Maxine Weinstein, Georgetown University 1:30–1:45 Case Study 1—PENN Biomarker Core of the Alzheimer’s Disease Neuroimaging Initiative Leslie M. Shaw, University of Pennsylvania 1:45–2:00 Case Study 2—SWAN: Current Practices of Receipt and Storage of Biospecimens Kathi Shea, SeraCare Life Sciences, Inc. 2:00–2:15 Case Study 3—Laws and Regulations on Biobanks: Present Status and Future Directions Bartha Knoppers, University of Montreal 2:15–3:15 Discussion 3:15–3:30 Break SESSION 4: Informed Consent Session Chair: Barbara Stanley, Columbia University 3:30–4:00 Informed Consent: Best Practices Holly Taylor, Johns Hopkins University

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 APPENDIX A 4:00–4:15 Informed Consent: Recent Developments in Legal and Ethical Requirements for Data Collection and Use Paul Appelbaum, Columbia University 4:15–4:30 Research with Biological Data Collected in Social Surveys: The Role of IRBs in Informed Consent Karen Maschke, The Hastings Center 4:30–5:30 Discussion 6:30–8:30 Working Dinner November , 00—Room 00 SESSION 5: Protecting Data and Confidentiality Session Chair: Bob Wallace, University of Iowa 8:30–8:50 am Americans’ Changing Concerns About Health Privacy Alan Westin, Columbia University (Emeritus) 8:50–9:10 Quantifying Disclosure Risks Jerry Reiter, Duke University 9:10–9:30 A Privacy Preserving Framework for Integrating, Storing, and Querying Biological Data Murat Kantarcioglu, University of Texas 9:30–9:50 Assessing the Utility of Statistical Methods for Limiting Disclosure Risk: Value of Synthetic Data Sets John Abowd, Cornell University 9:50–11:00 Discussion 11:00–11:15 Break SESSION 6: Accessing and Sharing Data Session Chair: Myron Gutmann, University of Michigan 11:15–11:35 Data Licensing Agreements/Restricted Access Alan Karr, National Institute of Statistical Sciences

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 CONDUCTING BIOSOCIAL SURVEYS 11:35–11:55 Repository Issues and Practices MaryFran Sowers, University of Michigan 11:55–12:45 pm Discussion 12:45–1:45 Lunch 1:45–3:00 SESSION 7: Collecting Our Thoughts Session Chair: Bob Hauser, University of Wisconsin Format: Brief comments from the chair followed by a period of general discussion. • What have we learned? • Remaining questions • Conclusions • Future directions 3:00 pm Public Workshop Adjourn 3:15–5:30 CLOSED SESSION (COMMITTEE MEMBERS ONLY)—Room 213 • Report preparation 6:30–8:30 Working Dinner November , 00 9:00–5:30 pm CLOSED SESSION (COMMITTEE MEMBERS ONLY)—Room 208 • Report preparation (cont.)