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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 …
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., … and controlled-data access mechanisms. Data stored in NIH-designated data repositories (e.g., NIH database of …
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 community rapidly, completely, and in   NIH-designated data repositories  (e.g.,  NIH database of … Partnerships, such as the  National Cancer Institute's Genomic Data Commons . When NIH data resources are not …
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 … date) should state what data types will be shared (e.g., genomic, phenotype, health information, etc.), for what …
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 … not meet the definition of ‘large-scale’ according to the NIH guidance regarding the scope of the GDS Policy. …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
NIH Office of Communications … The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to …
Policies and Guidance
Frequently Asked Questions regarding the NIH Genomic Data Sharing (GDS) Policy.
GDS Policy FAQs … Frequently Asked Questions regarding the NIH Genomic Data Sharing (GDS) Policy. … Frequently Asked Questions …
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 … genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely … sharing of all data types. However, at this time the NIH GDS Policy and NHGRI implementation plans apply …
Policy Issues
Guidance for NHGRI Extramural Investigators includes steps for preparing for and submitting data under the Genomic Data Sharing (GDS) Policy.
… Key Elements of Genomic Data Sharing Plans The following chart outlines the key … be shared with the community rapidly, completely, and in NIH-designated data repositories (e.g., AnVIL, dbGaP, GEO). …
Staff
Elena Ghanaim is a policy analyst in the Policy Analyst for the Policy and Program Analysis Branch at the National Human Genome Research Institute. ​
… Elena Ghanaim is the Policy Advisor for Data Science and Sharing at the National Human Genome … and implementation, and works with international, NIH and grantee partners on data sharing and privacy policy issues. Elena also advises the NHGRI Genomic Data Science Analysis, Visualization and Informatics …