Improving Access to and Confidentiality of Research Data: Report of a Workshop (2000)

8:45

WELCOME AND OPENING REMARKS

Barbara Boyle Torrey, Director, Commission on Behavioral and Social Sciences and Education

Miron Straf, Director, Committee on National Statistics

Richard Suzman, Behavioral and Social Research Program,National Institute on Aging

INTRODUCTION AND WORKSHOP PREVIEW

Norman Bradburn, Workshop Chair

9:05

SESSION I. Linked longitudinal databases: Achievements to date and prospects

1. TOPIC 1: Case Studies

   Paper 1: HRS application: “How Policy Variables Influence the Timing of Social Security Disability Applications”

   • Richard Burkhauser, Cornell University

   • Robert Weathers, Cornell University

Paper 2: NLS-Y application: “Confidential Data Files Linked to the National Longitudinal Survey of Youth, 1979: A Case Study”

• Rachel Gordon, University Illinois at Chicago

2. TOPIC 2: Risks and Rewards of Data Linking

   Presentation: “Protecting Confidentiality of Linked Datasets: Don't Throw the Baby Out with Bathwater”

   • J. Michael Dean, University of Utah

3. TOPIC 3: Report from the Conference on the Value of Linked Data

   Presentation: Robert Willis, University of Michigan

4. GENERAL DISCUSSION OF PAPERS/PRESENTATIONS

11:10

SESSION II. Legal and ethical requirements for dissemination: Recent and prospective developments

1. TOPIC 1: Philosophical Issues

   Paper: “Regulating Access to Research Data Files: Ethical Issues”

   • Mary Ann Baily, George Washington University

   Discussant: Robert Boruch, University of Pennsylvania

2. TOPIC 2: Recent and Prospective New Legislation

   Paper: Donna Eden, U.S. Department of Health and Human Services

   Discussant: Robert Gellman, Privacy and Information Policy Consultant

3. TOPIC 3: Problems and Issues of Institutional Review Boards

   Paper: Thomas Puglisi/Jeffery Cohen, Office for Protection from Research Risks, National Institutes of Health

4. GENERAL DISCUSSION, led by Norman Bradburn

2:00

SESSION III. Procedures for releasing public-use microdata files

1. TOPIC 1: Agency Practices for Releasing Public-Use Micro-Data Files

   Presentation: “Checklist on Disclosure Potential of Proposed Data Releases,” developed by the Interagency Confidentiality and Data Access Group

   • Alvan Zarate, National Center for Health Statistics

   Paper: “A Survey of Statistical Disclosure Limitation (SDL) Practices of Organizations that Distribute Public Use Microdata”

   • Thomas Jabine, Private Consultant

   • Alice Robbin, Indiana University

   • Heather Koball, Committee on National Statistics

   Discussant: Erik Austin, Inter-university Consortium for Political and Social Research

   Paper: “Multiple Imputation in the Survey of Consumer Finances”

   • Arthur Kennickell, Federal Reserve Board

   Discussant: Stephen Fienberg, Carnegie Mellon University

2. TOPIC 2: Quantification of Disclosure Risk

   Paper: Sallie Keller-McNulty, Los Alamos National Laboratory

   • George Duncan, Carnegie Mellon University

   Discussant: Latanya Sweeney, Carnegie Mellon University

4:30

GENERAL DISCUSSION

5:00

CLOSING COMMENTS AND ADJOURN

9:00

SESSION IV. Procedures for restricting access: who gets access to micro-data, and under what conditions

1. TOPIC: Use of restricted access procedures for major linked longitudinal databases

   Paper: “Review of Data Licensing Agreements at U.S. Government Agencies and Research Organizations”

   • Paul Massell, U.S. Census Bureau

   Discussant: Mark McClellan, Stanford University

   Presentation: Remote data access at the National Center for Health Statistics

   • John Horm, National Center for Health Statistics

   Discussant: Finis Welch, Texas A&M University

   Presentation: Statistics Canada procedures; data liberation and associated Internet background information

   • Garnett Picot, Statistics Canada

   Presentation: Data licensing systems

   • Marilyn McMillen, National Center for Education Statistics

   Presentation: Data Centers—A critical assessment

   • Patrick Collins, California Census Research Data Center

   • J. Bradford Jensen, Carnegie Mellon Census Research Data Center

1:30

GENERAL DISCUSSION

2:00

SESSION V. Workshop Summary

Review and address questions posed at the opening of the workshop

• Thomas Louis, Member, Committee on National Statistics

• Norman Bradburn, Workshop Chair

General response

• Workshop participants

2:45

CLOSING COMMENTS/ADJOURN