National Academies Press: OpenBook

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

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Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
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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

Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

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

Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

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 18, 2008—Room 100

 

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

Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

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 19, 2008

9:00–5:30 pm

CLOSED SESSION (COMMITTEE MEMBERS ONLY)—Room 208

  • Report preparation (cont.)

Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 93
Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 94
Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 95
Suggested Citation:"Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 96
Next: Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys »
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Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light.

In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis--all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing.

Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.

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