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- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program5
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
Health
The Family Health History Group connects stakeholders, researchers, and thought leaders to share learning, understand barriers in depth, and discuss issues and potential solutions related to the collection of family health history information.
… related to the collection of family health history information. Multi-disciplinary, volunteer members come from … Members meet regularly by teleconference. For more information, please email genetics@cdc.gov . … Members … related to the collection of family health history information. … The Family Health History Group connects …
For Health Professionals
The Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC-PEG) aims to improve genomic literacy of healthcare providers and enhance the effective practice of genomics-informed healthcare by facilitating interactions among the key stakeholders in genomics education.
… PowerPoint Downloads  ISCC-PEG Information PPT Slide  (For use in member presentations) … Society of Human Genetics Annual Meeting 2021  For more information on the ISCC-PEG and its mission, refer to … . Questions: ISCC-NHGRI@nih.gov . ISCC-PEG Members submit information to the Compendium to describe their genomics …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… Its two-tiered data distribution system has made some information and data available to the public without … accelerate research by combining and comparing large and information-rich datasets." A key tenet of the GDS policy is … expectations provided through accompanying Supplemental Information to the NIH Genomic Data Sharing Policy.  The NIH …
The Genomics Landscape
In the April 2020 edition of The Genomics Landscape, NHGRI Director Eric Green provides an update on the final stage of the Genomics2020 strategic planning process; the NIH website for COVID-19 information, the Gene documentary debut on PBS and more.
… diversions. First, anticipating interest in COVID-19 information, one of the stories below describes some useful information sources about the virus and some specific … research training grant Novel synthetic nucleic acid technology development – R43/R44 , R21 and R01 NHGRI …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… Clinical Utility: Refers to whether the test can provide information about diagnosis, treatment, management, or … insurance companies, and regulators will have better information with which to establish the clinical utility of … to the rapid advances in next-generation sequencing (NGS) technology, the pervasiveness of clinical genetic testing …
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)
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About NHGRI
The Genomics and Society Working Group advises on planning and priorities for genomics and society activities at NHGRI.
… Genomics Legislation, Privacy And Genomics, Genetic Information Non-discrimination Act (GINA) … The Genomics and …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… please see Additional Resources . … Cornell Legal Information Institute This website allows users to search for … up to date. National Society of Genetic Counselors To find information about state genetic counselor licensing laws, … ​ … Genomics Legislation, Human Genome Project, Genetic Information Non-discrimination Act, GINA, Genetic Disease, …
The Genomics Landscape
In the January 2020 edition of The Genomics Landscape, NHGRI Director Eric Green highlights the newly developed polygenic risk scores webpage, which provides graphical and textual information about polygenic risk scores, describes polygenic traits, introduces how polygenic risk scores can be calculated, and explains how such scores can be interpreted.
… of Immunology in Delhi, and the Indian Institute of Technology in Delhi. It was valuable to learn about India’s … novel and innovative genomic research projects. Additional information can be found in the recently issued Notice … risk scores webpage, which provides graphical and textual information about polygenic risk scores, describes polygenic …
Policies and Guidance
For FY21, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… (eMERGE), Clinical Sequencing Exploratory Research (CSER), technology development, training and career development … Institute is committed to disseminating the latest information and technologies through courses and conference … six weeks in advance of the planned receipt date. For more information, see: NOT-OD-02-004 : Revised Policy On The …