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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.
… date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. The DMS Policy … them. Given the strong commitment of NHGRI researchers to genomic data sharing, the institute believes that the … per year of funding or those generating large-scale genomic datasets were expected to provide such plans. Once …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… Is raw genomic sequence data considered identifiable or de-identifiable? What are the nuances? Genomic data is unique to an individual. In general, the … define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of …
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 … of scientific data, with the following exception: for genomic data, NHGRI expects non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… topics: Overview of the NIH Data Sharing Management Policy Application of the DMS Policy to ELSI Research Data sharing templates and resources … NIH Data Sharing and Management Policy NHGRI’s Data Sharing Policies and Expectations NIH … Complete List of NIH Activity Codes Subject to the DMS Policy (PDF) Considerations for Researchers Working with …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … Institute (NHGRI). Her responsibilities in PPAB include policy analysis, policy development, coding and reporting, … The focus areas of her work are FDA regulation of genomic technologies and U.S. science policy legislation. …
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.
… to Informational Elements Outlined by NIH Guidance Genomic and phenotypic data, and any other data relevant for … the broadest appropriate future use and sharing of genomic and phenotypic data. Example 1: Consent for General Research Uses (GRU) Portions of your samples, genomic data, and health information will be stored for an …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… Genomic medicine is an emerging medical discipline that involves using genomic information about an individual as part of their … therapeutic decision-making) and the health outcomes and policy implications of that clinical use. Already, genomic … be used to more accurately guide individual diagnosis . Genomic medicine, as defined above, can be considered a …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human … Kapustij spearheads the branch’s efforts to understand the policy implications of genomics research and technologies, … policy positions on issues arising from the translation of genomic research discoveries to uses within the public …
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 … For the last three years, she has advised the NHGRI Genomic Data Science Analysis, Visualization and Informatics … Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome …
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.
… Please review the NIH webpage on the Research Tools Policy for the NIH definition of “research tools,” principles … research, spanning the various research areas (e.g., genomic science, genomic medicine, ELSI research), produces research tools … journals PubMed Central (Note: See the Public Access Policy regarding the NIH requirement to submit final, …