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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 … primary study, if consistent with study design. When the policy applies NHGRI encourages sharing of all data types. … to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data, …
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 purposes using …
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 … Investigators (PIs) should indicate alternative data sharing approaches (e.g., consortia databases or PI-hosted … level 2 file comprises the reads “piled” on a reference genome. A submission would be a file (e.g., binary alignment …
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 since the Human Genome Project. While many recognize that sharing genomic …
Archive
… Public Webinar on the Draft Genomic Data Sharing Policy … Archive …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to … September 2013. The GDS policy can be traced to the Human Genome Project, completed in 2003, which required rapid and …
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 … or made available through NHGRI-approved alternative data sharing plans. NHGRI finds value in and encourages the … to the NIH guidance regarding the scope of the GDS Policy. Investigators should consult with appropriate NHGRI …
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.
… Per the NIH GDS Policy, informed consent documents for prospective data collection for studies started after January 25, 2015 … 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.
… Per the  NIH GDS Policy , NHGRI will consider 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 … Institutes and Centers for use in research.   The Human Genome Variation Society (HGVS)’s Sequence Variant …