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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.
… going to be a very busy one for NHGRI and for the field of genomics more generally. Many of us felt like we got “shot … research and what he is excited about for the future of genomics. As the title of the profile says, Neil “unravels … complexity of childhood diseases” and “aims to diversify genomics research.” All the best, …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of … risks to participants, including the Genomic Data Sharing Policy and the NIH Policy for Issuing Certificates of Confidentiality . … and sharing plan. As outlined in NIH's Supplemental Policy Information: Selecting a Repository for Data Resulting …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as … NHGRI data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data … Note: The NIH Data Management and Sharing (DMS) Policy ( NOT-OD-21-013 ) went into effect on January 25, …
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, workshop … Rebecca Hong, genomic policy, FDA regulation, genomic technology, legislation, AIDS …
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.
… possible. - Credit: NHGRI Special Considerations for Genomics Research and NIH Sample Language for Data and … you. - Credit: NHGRI Special Considerations for Genomics Research Example 2 Traditional identifying … information. - Credit: NHGRI Special Considerations for Genomics Research Example 2 Other researchers must get …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… therapeutic decision-making) and the health outcomes and policy implications of that clinical use. Already, genomic … has called for the adoption of 'precision medicine,' where genomics, epigenomics, environmental exposure, and other data … in particular, is at the leading edge of incorporating genomics, as diagnostics for genetic and genomic markers are …
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 … branch’s efforts to understand the policy implications of genomics research and technologies, assess policy needs for … to the ethical, legal and social implications of human genomics research and develops policies to address these …
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 … (NHGRI). She spearheads NHGRI’s scientific data sharing policy development, oversight, and implementation. Ms. … NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has advised the …
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 … journals PubMed Central (Note: See the Public Access Policy regarding the NIH requirement to submit final, … of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy . …