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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… An individual’s privacy should be respected when their genomic information is used for research, clinical … or other uses. This page summarizes genetic and genomic privacy in these domains, along with information on … of the research participants (see Genomic Data Sharing Policy  below). In addition, NIH issues Certificates of …
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.
… identifier to facilitate attribution of data use … 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 …
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 … elsi@mail.nih.gov . … NIH Data Sharing and Management Policy NHGRI’s Data Sharing Policies and Expectations NIH …
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 …
Policies and Guidance
For most of FY20, NHGRI’s extramural program will be operating under the 2011 National Human Genome Research Institute (NHGRI) strategic plan.
… Institute (NHGRI) strategic plan - Charting a course for genomic medicine from base pairs to bedside  ( Nature  470: … identifies the following criteria for high priority in genomic sciences and genomic medicine: technology … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … The focus areas of her work are FDA regulation of genomic technologies and U.S. science policy legislation. … … Group Research … Rebecca Hong, B.S. … Rebecca Hong, genomic policy, FDA regulation, genomic technology, …
Policies and Guidance
For FY21, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… of disease; the implementation and effectiveness of genomic medicine; genomic data science and bioinformatics; training, … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
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 …
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human … policy positions on issues arising from the translation of genomic research discoveries to uses within the public … Human Genome Research Institute. … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health …