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- Ethical, Legal and Social Implications (ELSI) Research Program4
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- 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
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 … for the Institute to implement and maintain NIH and NHGRI data sharing policies. These activities include: Promoting …
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 … research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible …
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 speed the translation of data into …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… human genomic studies, including those submitting data to AnVIL and studies with an Alternative Data Sharing Plan. Follow the standard process outlined in How …
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 ensures maximal use of participants’ data for scientific discovery, rigor and reproducibility, and …
The Genomics Landscape
In 2022, The Genomics Landscape spotlighted genomic data sharing each month in a series of entries. This page contains a collection of each of those entries.
… Landscape Originally published: January 13, 2022 Data sharing is central to the field of genomics. Both human and non-human genomic data have been widely shared through public data resources, …
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 … Genome Project. While many recognize that sharing genomic data is critical to scientific progress, considerable privacy …
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.
… seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the GDS …
Event
On November 30th, 2020, NHGRI convened a virtual meeting for journal editors and NHGRI/NIH staff to discuss genomic data sharing.
… for journal editors and NHGRI/NIH staff to discuss genomic data sharing. The goal of this meeting was to learn more about the … papers (“Journals”); and, to develop ideas to improve data sharing policy, its implementation, and the practice of …
Event
On May 19-20, 2016, the National Human Genome Research Institute (NHGRI) hosted a two-day workshop where participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users.
… Update Workshop on Establishing a Central Resource of Data from Genome Sequencing Projects Report Resolving … participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users. … NISC, 5th Floor Conference Room …