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Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… Broad data sharing promotes maximum public benefit from federally funded … genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely …
Policy Issues
Investigators can access human genomic data through a tiered model of unrestricted-access (i.e., open) and controlled-data access mechanisms.
… Investigators can access human genomic data through a tiered model of unrestricted-access (i.e., … principles and procedures outlined in the NIH Genomic Data Sharing (GDS) Policy . Access requests for specific research …
Policy Issues
Data standards for NHGRI GDS policy cover: guiding principles and expectations for data sharing; consent for and exceptions to broad data sharing; extent of data to be broadly shared; timeline for data sharing and guidance for data submission and data release.
… All data produced with NHGRI support should be shared with the … Partnerships, such as the  National Cancer Institute's Genomic Data Commons . When NIH data resources are not … Investigators (PIs) should indicate alternative data sharing approaches (e.g., consortia databases or PI-hosted …
Events
Data sharing has been a central tenet of the field of genomics since the Human Genome Project.
… Presentation Slides … Data sharing has been a central tenet of the field of genomics … Human Genome Project. While many recognize that sharing genomic data is critical to scientific progress, considerable …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… … The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to …
Archive
… Public Webinar on the Draft Genomic Data Sharing Policy … Archive …
Policies and Guidance
Information about data sharing plans, requests for exceptions to the Genomic Data Sharing Policy, and the process for submitting data.
… All final datasets (human or non-human, including microbial data) generated through large-scale genomic projects, not just those datasets generated to … or made available through NHGRI-approved alternative data sharing plans. NHGRI finds value in and encourages the …
Policy Issues
Per the NIH GDS Policy, informed consent documents for prospective data collection after January 25, 2015 should state what data types will be shared, for what purposes and whether sharing will occur through open or controlled access databases.
… NIH GDS Policy, informed consent documents for prospective data collection for studies started after January 25, 2015 … date) should state what data types will be shared (e.g., genomic, phenotype, health information, etc.), for what … Use, Disease-Specific research use, etc.), and whether sharing will occur through open (unrestricted) or controlled …
Policy Issues
Per the NIH GDS Policy, NHGRI will consider requests for alternatives or exceptions to standard genomic data sharing (GDS) expectations.
… requests for alternatives or exceptions to standard genomic data sharing (GDS) expectations. … Two GDS expectations may …
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… Frequently Asked Questions Data sharing is an important aspect of the research endeavor that … share both metadata and phenotypic data sharing along with genomic datasets that are required to be shared, in …