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- Ethical, Legal and Social Implications (ELSI) Research Program6
- 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
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- 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
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.
… Elements Outlined by NIH Guidance Genomic and phenotypic data, and any other data relevant for the study (such as … encourages the broadest appropriate future use and sharing of genomic and phenotypic data. Example 1: Consent … access to your own information. - Credit: NIH CoC Policy Page … Sample Informed Consent Language Aligned to …
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 … Institutes and Centers for use in research. The Human Genome Variation Society (HGVS)’s Sequence Variant …
The Genomics Landscape
In the February 2, 2023 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the new NIH Data Management and Sharing (DMS) Policy and how it emphasizes the importance of good data management practices.
… to diversify genomics research.” All the best, … Genome-wide data from medieval German Jews show that the Ashkenazi … … The effective date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. …
Event
On November 30th, 2020, NHGRI convened a virtual meeting for journal editors and NHGRI/NIH staff to discuss genomic data sharing.
… Materials … On November 30, 2020, the National Human Genome Research Institute (NHGRI) convened a virtual meeting … for journal editors and NHGRI/NIH staff to discuss genomic data sharing. The goal of this meeting was to learn more about the …
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)
… 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). She spearheads NHGRI’s …
News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… Office of Science Policy … At the National Human Genome Research Institute, we believe that broadly sharing research data will result in maximum public benefit, and we're …
Policies and Guidance
This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.
… What types of resources should be addressed in a Resource Sharing Plan? Please review the NIH webpage on the Research Tools Policy for the NIH definition of “research tools,” principles … laboratory equipment and machines) Protocols (e.g.,data collection instruments, consent materials, laboratory …
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 Individuals … participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users. … NISC, …
Policies and Guidance
The NHGRI funding policy is aimed at accelerating scientific and medical breakthroughs that improve human health.
… training and career development. … 2023 Final Funding Policy for NHGRI 2022 Final Funding Policy for NHGRI 2021 Final Funding Policy for NHGRI 2020 … … Archived … Current … Funding Policy … The National Human Genome Research Institute funding policy is aimed at …
Policies and Guidance
NHGRI encourages you to share your thoughts on the topics explored on genome.gov and other websites we own or administer.
… The National Human Genome Research Institute (NHGRI) encourages you to share your thoughts on the topics being discussed on genome.gov and other websites owned or administered by NHGRI. … or to remove comments, that are inconsistent with our policy, at our complete discretion. The views expressed in …