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FASEB RESPONDS TO NIH REQUEST FOR INFORMATION ON DATA AND INFORMATICS ISSUES
Created by on 03/27/2012

In January, the Advisory Committee to the National Institutes of Health (NIH) Director Working Group on Data and Informatics issued a request for information (RFI) to inform its deliberations on the management, integration, and analysis of large biomedical datasets. On March 8, 2012, the Federation of American Societies for Experimental Biology (FASEB) released its response, which urged an ongoing dialogue on these issues. The statement also recommended that NIH should:
  • Avoid a one-size-fits-all approach to the development of standards to accommodate the diversity of data types
  • Develop a consent model that allows patients to permit the use of their data in unspecified future research and enable them to allow or disallow certain categories of research
  • Reach out to the patient community early in the policy development process and consider their concerns
  • Work with other funding agencies to develop approaches to support mid-level IT infrastructure (e.g. general purpose computers, mass storage, and networking) that avoid inflicting operating inefficiencies
 
To view the full FASEB statement, click here.

 


 

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