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The Challenges of Releasing Human Data for AnalysisThe NASA Johnson Space Center s (NASA JSC) Committee for the Protection of Human Subjects (CPHS) recently approved the formation of two human data repositories: the Lifetime Surveillance of Astronaut Health Repository (LSAH-R) for clinical data and the Life Sciences Data Archive Repository (LSDA-R) for research data. The establishment of these repositories forms the foundation for the release of data and information beyond the scope for which the data was originally collected. The release of clinical and research data and information is primarily managed by two NASA groups: the Evidence Base Working Group (EBWG), consisting of members of both repositories, and the LSAH Policy Board. The goal of unifying these repositories and their processes is to provide a mutually supportive approach to handling medical and research data, to enhance the use of medical and research data to reduce risk, and to promote the understanding of space physiology, countermeasures and other mitigation strategies. Over the past year, both repositories have received over 100 data and information requests from a wide variety of requesters. The disposition of these requests has highlighted the challenges faced when attempting to make data collected on a unique set of subjects available beyond the original intent for which the data were collected. As the EBWG works through each request, many considerations must be factored into account when deciding what data can be shared and how - from the Privacy Act of 1974 and the Health Insurance Portability and Accountability Act (HIPAA), to NASA s Health Information Management System (10HIMS) and Human Experimental and Research Data Records (10HERD) access requirements. Additional considerations include the presence of the data in the repositories and vetting requesters for legitimacy of their use of the data. Additionally, fair access must be ensured for intramural, as well as extramural investigators. All of this must be considered in the formulation of the charters, policies and workflows for the human data repositories at NASA.
Document ID
20110016208
Acquisition Source
Johnson Space Center
Document Type
Abstract
Authors
Fitts, Mary (NASA Johnson Space Center Houston, TX, United States)
Van Baalen, Mary (NASA Johnson Space Center Houston, TX, United States)
Johnson-Throop, Kathy (NASA Johnson Space Center Houston, TX, United States)
Lee, Lesley (Wyle Integrated Science and Engineering Group Houston, TX, United States)
Havelka, Jacque (Wyle Integrated Science and Engineering Group Houston, TX, United States)
Wear, Mary (Wyle Integrated Science and Engineering Group Houston, TX, United States)
Thomas, Diedre M. (Wyle Integrated Science and Engineering Group Houston, TX, United States)
Date Acquired
August 25, 2013
Publication Date
January 1, 2011
Subject Category
Life Sciences (General)
Report/Patent Number
JSC-CN-24804
Meeting Information
Meeting: 83rd AsMA Annual Scientific Meeting
Location: Atlanta, GA
Country: United States
Start Date: May 13, 2012
End Date: May 17, 2012
Sponsors: Aerospace Medical Association
Distribution Limits
Public
Copyright
Public Use Permitted.

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