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About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… is committed to driving the responsible use of genomics in society in order to advance knowledge and ensure that … of genomics research in our work, including these key issues. … Related Content … Policy Issues in Genomics … NHGRI considers the ethical, …
Archive
Policy and Ethics Issues … 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.
… Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to speed the … of research participants. The final policy was posted in the Federal Register Aug. 26, 2014 and published in the … oversight of the GDS policy, including policy needs and issues related to data submission and access. The committees …
News Release
The NHGRI-ASHG Genetics and Public Policy Fellowship prepares scientists for careers in science policy.
… and medical care of Americans is greatly influenced by the policy decisions that guide genomic research and its use in the clinical setting. Understanding the interplay of … … NHGRI-ASHG Genetics and Public Policy Fellowship, policy issues in genomics, Cristina Kapustij … The NHGRI-ASHG …
About NHGRI
The Genomics and Society Working Group advises on planning and priorities for genomics and society activities at NHGRI.
… NHGRI Genomics and Society Working Group was established in 2012 as a working group of the National Advisory Council … in light of changes in genomics, genomic medicine, and the policy landscape, aiming to identify emerging issues or gaps. Identifies areas of potential synergy or …
Policy Issues
Investigators can access human genomic data through a tiered model of unrestricted-access (i.e., open) and controlled-data access mechanisms.
… open) and controlled-data access mechanisms. Data stored in NIH-designated data repositories (e.g., NIH database of … procedures outlined in the NIH Genomic Data Sharing (GDS) Policy . Access requests for specific research purposes using … open) and controlled-data access mechanisms. … Policy Issues
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 … plan).  … Information that NIH expects to be conveyed in informed consent documents are defined in the  NIH … best practices for drafting informed consent documents for genomics research, see the NHGRI Informed Consent Resource . … through open or controlled access databases. … Policy Issues
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 … expectation for broad data sharing (i.e., data deposition in an NIH-designated data repository): When consistent with … standard genomic data sharing (GDS) expectations. … Policy Issues
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.
… be shared with the community rapidly, completely, and in   NIH-designated data repositories  (e.g.,  NIH database … on future year funding for non-compliance with the GDS policy. … All NHGRI-funded studies involving human subjects … guidance for data submission and data release. … Policy Issues
Archive
… Mouse Genome Monthly: Past Issues … Archive …