Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata (2010)
Chapter: Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys
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
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8:30–8:45 am |
Welcome and Opening Remarks |
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NRC representative Bob Hauser, Committee chair Richard Suzman, NIA
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SESSION 1: Overview |
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Session Chair: Bob Hauser, University of Wisconsin |
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8:45–9:05 |
Data Access Versus Confidentiality: Balancing Risks and Benefits |
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Ellen Wright Clayton, Vanderbilt University |
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9:05–9:25 |
Where Are We Now? Where Do We Want to Go? |
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George Church, Harvard University |
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9:25–9:45 |
Overview of Biobanks and Data Harmonization |
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Jennifer Harris, The Norwegian Institute of Public Health, Oslo, Consultant to NIA, NIH |
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9:45–10:45 |
Discussion |
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10:45–11:00 |
Break |
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SESSION 2: Risks and Rewards of Data Linking |
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Session Chair: Hank Greely, Stanford University |
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11:00–11:20 |
Risks and Rewards |
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Katherine Mullan Harris, University of North Carolina |
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11:20–11:40 |
Legal and Ethical Issues in Using Biological Data and How They Differ from Social Science Data |
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Barbara Koenig, Mayo Clinic, University of Minnesota |
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11:40–12:30 pm |
Discussion |
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12:30–1:30 |
Lunch |
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SESSION 3: Storing and Maintaining Biological Data |
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Session Chair: Maxine Weinstein, Georgetown University |
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1:30–1:45 |
Case Study 1—PENN Biomarker Core of the Alzheimer’s Disease Neuroimaging Initiative |
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Leslie M. Shaw, University of Pennsylvania |
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1:45–2:00 |
Case Study 2—SWAN: Current Practices of Receipt and Storage of Biospecimens |
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Kathi Shea, SeraCare Life Sciences, Inc. |
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2:00–2:15 |
Case Study 3—Laws and Regulations on Biobanks: Present Status and Future Directions |
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Bartha Knoppers, University of Montreal |
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2:15–3:15 |
Discussion |
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3:15–3:30 |
Break |
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SESSION 4: Informed Consent |
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Session Chair: Barbara Stanley, Columbia University |
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3:30–4:00 |
Informed Consent: Best Practices |
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Holly Taylor, Johns Hopkins University |
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4:00–4:15 |
Informed Consent: Recent Developments in Legal and Ethical Requirements for Data Collection and Use |
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Paul Appelbaum, Columbia University |
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4:15–4:30 |
Research with Biological Data Collected in Social Surveys: The Role of IRBs in Informed Consent |
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Karen Maschke, The Hastings Center |
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4:30–5:30 |
Discussion |
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6:30–8:30 |
Working Dinner |
November 18, 2008—Room 100
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SESSION 5: Protecting Data and Confidentiality |
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Session Chair: Bob Wallace, University of Iowa |
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8:30–8:50 am |
Americans’ Changing Concerns About Health Privacy |
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Alan Westin, Columbia University (Emeritus) |
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8:50–9:10 |
Quantifying Disclosure Risks |
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Jerry Reiter, Duke University |
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9:10–9:30 |
A Privacy Preserving Framework for Integrating, Storing, and Querying Biological Data |
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Murat Kantarcioglu, University of Texas |
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9:30–9:50 |
Assessing the Utility of Statistical Methods for Limiting Disclosure Risk: Value of Synthetic Data Sets |
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John Abowd, Cornell University |
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9:50–11:00 |
Discussion |
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11:00–11:15 |
Break |
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SESSION 6: Accessing and Sharing Data |
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Session Chair: Myron Gutmann, University of Michigan |
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11:15–11:35 |
Data Licensing Agreements/Restricted Access |
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Alan Karr, National Institute of Statistical Sciences |
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11:35–11:55 |
Repository Issues and Practices |
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MaryFran Sowers, University of Michigan |
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11:55–12:45 pm |
Discussion |
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12:45–1:45 |
Lunch |
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1:45–3:00 |
SESSION 7: Collecting Our Thoughts |
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Session Chair: Bob Hauser, University of Wisconsin |
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Format: Brief comments from the chair followed by a period of general discussion.
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3:00 pm |
Public Workshop Adjourn |
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3:15–5:30 |
CLOSED SESSION (COMMITTEE MEMBERS ONLY)—Room 213
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6:30–8:30 |
Working Dinner |
November 19, 2008
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9:00–5:30 pm |
CLOSED SESSION (COMMITTEE MEMBERS ONLY)—Room 208
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