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- Ethical, Legal and Social Implications (ELSI) Research Program7
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Genomic Innovator Awards2
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
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 …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… Language Aligned to Informational Elements Outlined by NIH Guidance  Genomic and phenotypic data, and any other data relevant for the study (such as …
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 …
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… The NHGRI Data Sharing Governance Committee is responsible for the … necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies. These activities … Members  Erin M. Ramos, Ph.D., MPH Co-chair Division of Genomic Medicine  Barbara Thomas, Ph.D. (DAC Chair) Co-Chair …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… Liaison Branch … Today, the National Institutes of Health (NIH) issued a notice in its Guide to Grants and Contracts … seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing …
About NHGRI
A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at the National Human Genome Research Institute.
… A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at … Genome Research Institute. ​ … Website Accessibility, NIH Policy, Genomic Data Sharing, NHGRI Policy, NIH Website …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… registration in dbGaP is required for large-scale human genomic studies, including those submitting data to AnVIL and studies with an Alternative Data Sharing … for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ):  NHGRI’s Basic Study Information Template    …
Policies and Guidance
Frequently Asked Questions regarding the GDS Policy expectations for NHGRI-funded genomic research.
… regarding the GDS Policy expectations for NHGRI-funded genomic research. … Data Types NHGRI encourages sharing of all genomic data and … not meet the definition of ‘large-scale’ according to the NIH guidance regarding scope of the GDS Policy . …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… M.D., Ph.D. … Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome … Ms. Ghanaim collaborates with international, NIH and grantee partners on data sharing and privacy policy …