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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
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and describes what … protections GINA does and does not offer. … The Genetic Information Nondiscrimination Act (GINA) of 2008 protects … Americans from discrimination based on their genetic information in both health insurance (Title I) and employment …
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, Access, and Management . For more information on the NIH Genomic Data Sharing Policy, please …
Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
… compatible with limited or older samples. Today, genetic information is used by law enforcement to investigate … criminal acts. The legal system also uses genetic information to exonerate those who have been convicted of … crime scenes, in order to identify criminal suspects. The technology's analysis is limited to 13-20 designated DNA …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… data — such as associated phenotype data (e.g., clinical information relevant to the disease under study), exposure data, and descriptive information (e.g., protocols or methodologies used) — are … ) and NHGRI GDS Policy Data Standards  for more information about NHGRI’s guiding principles and expectations …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… studies, scientists may discover new health-related information about volunteers who have chosen to participate … human genome, there remains much to be discovered. Genomic information is interpreted differently over time as more is … Results … Clinical research may yield new health-related information about volunteers who have chosen to participate …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… NIH institutes and centers (ICs). Program Officer contact information is also included. … (R01, R21, R03) The NHGRI is … understanding and use of genetic and genomic information and associated technologies.  Genomics at the … consent and autonomy of future generations. Use of genomic technology to identify genetic causes of disease and …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… before becoming a law. The history of the Genetic Information Nondiscrimination Act  (GINA), a law that was … can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example. … … can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example. … …
About NHGRI
A brochure providing background information about the National Human Genome Research Institute (NHGRI) as an organization in an easy-to-read format.
… … A Look Inside … Formats … NHGRI Brochure … Background information about the National Human Genome Research … an easy-to-read format. … A brochure providing background information about the National Human Genome Research …
Staff
Mr. Benjamin Berkman is the deputy director of NHGRI's Bioethics Core.
News Release
The Clinical Sequencing Exploratory Research Consortium has offered an ethical framework to guide pediatricians in pursuing clinical sequencing studies.
… particular, face complicated ethical questions about what information they should disclose, and to whom, when genome … "have to do with the complexity and scope of the [genetic] information, not with ethics." Co-authors of the PEDIATRICS … and career development at sites nationwide. Additional information about NHGRI can be found at its website, …