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- Human Genome Reference Program (HGRP)1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)1
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… careful explanation about how the participant’s genomic information will be used during and after the study, as well … that must be met during this process are: providing key information. confirming the participant understands the information. ensuring any decision to participate is …
Research Funding
A submitted grant application undergoes a two-step, peer-review process to determine its eligibility for funding.
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 … government websites are available that provide relevant information basics of the virus (and the disease it causes), …
Research Funding
Frequently asked questions for Investigator-Initiated Research on Genetic Counseling Processes and Practices FOAs (RFA-HG-20-048 and RFA-HG-20-049).
… September 25, 2020 Webinar Information … Funding Opportunity Announcements ( … in genomic medicine which involves including genetic information about an individual as part of their clinical …
News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… With this in mind, NIH released today a Request for Information (RFI) seeking public comments on the data … on how to comment, please visit NIH Request for Information on Processes for database of Genotypes and … dbGaP data submission and access statistics, including DAR processing times and data management incidents. Development …
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
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… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …
Educational Resources
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment.
… Genetic Information Nondiscrimination Act (GINA) … The Genetic Information Nondiscrimination Act (GINA) is federal … in regard to health insurance and employment. … Genetic Information Nondiscrimination Act, GINA, Federal Legislation, …
News Release
Fearful patients who received information about the role of genomics in obesity were less likely to take steps to improve health habits
… … New research suggests that fearful patients who received information about the role of genomics in being overweight viewed the information as threatening and were less likely to take steps … impact, she wanted to determine how to communicate information about genomics and weight so that patients are …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … she said, and ways in which doctors might use this information to improve clinical treatment and practice. These … and the effects on healthcare systems, in using this information. The following research groups have been awarded …
Administrative
The Information Technology Branch provides leadership and service for information technology resources at NHGRI.
… The Information Technology Branch (ITB) provides leadership and service for all information technology (IT) resources for the National Human … and administrative support of computer networks. Information Resource Management ITB researches federal and IT …