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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 … Jan. 25, 2015, receipt date, the policy will apply to all NIH-funded, large-scale human and non-human projects that …
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 … Prior to submitting the data to an NIH-designated data repository, data will be stripped of … protection will be implemented.  Example 1  Your genomic data and health information will not be labeled with …
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 … 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 … to NHGRI data sharing policies. Providing consultation for policy or practice development. …
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.
… 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 … NIH is seeking public feedback regarding the proposed data …
Policies and Guidance
Frequently Asked Questions regarding the GDS Policy expectations for NHGRI-funded genomic research.
… Frequently Asked Questions regarding the GDS Policy expectations for NHGRI-funded genomic research. … Data Types NHGRI encourages sharing of all genomic data and data types including, but not limited to, … not meet the definition of ‘large-scale’ according to the NIH guidance regarding scope of the GDS Policy . …
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 the … A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at … 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    …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted … Access to Genomic Summary Results In 2008, researchers raised concerns … science and any potential risks to research participants, NIH officially would move genomic summary results from …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers … require explicit consent for future research use and broad data sharing of all genomic data derived from human sources, such as specimens … NHGRI is committed to the promotion of forward-thinking genomic data-sharing processes, with a clear understanding of …