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Activity Number:
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493
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Type:
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Invited
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Date/Time:
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Thursday, August 10, 2006 : 8:30 AM to 10:20 AM
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Sponsor:
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Section on Government Statistics
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| Abstract - #304942 |
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Title:
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Federal Data Sharing Requirements: Issues, Ethical Challenges, and Roles for the Statistical Community
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Author(s):
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Joan E. Sieber*+ and Karen M. Hansen*+ and Helen McGough*+ and Alan M. Zaslavsky*+
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Companies:
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California State University, East Bay and Fred Hutchinson Cancer Research Center and University of Washington and Harvard Medical School
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Address:
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2060 Quail Canyon Court, Hayward, CA, 94542, J6-110, Seattle, WA, 98109-1024, 3935 University Way NE, Seattle, WA, 98105-6613, Department of Health Care Policy, Boston, MA, 02115-5821,
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Keywords:
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data sharing ; disclosure avoidance ; research ethics committees ; HIPAA
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Abstract:
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In this panel discussion, we will review briefly current data sharing practices and relevant requirements of selected federal agencies in the United States that fund human subjects research. We also will summarize the Privacy Rule of the Health Insurance Portability and Accountability Act of 1996. Panel members will address important questions: How can statisticians work with principal investigators (PIs) and research ethics committees as they seek to comply with data sharing requirements? How can statisticians better educate research administrators about their responsibilities as their institutions participate in data sharing agreements with funders and secondary data users? Through what programs can the statistical community better educate PIs, research ethics committees, and research administrators about suitable methods for protecting confidentiality?
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- The address information is for the authors that have a + after their name.
- Authors who are presenting talks have a * after their name.
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