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- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program6
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program5
- Enhancing Opportunities in Computational Genomics and Data Science1
- Human Genome Reference Program (HGRP)2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- Advancing Genomic Medicine Research (AGMR)1
- Encyclopedia of DNA Elements (ENCODE) Project1
- Molecular Phenotypes of Null Alleles in Cells (MorPhiC)1
- Clinical Genome (ClinGen) Resource1
- Genomic Innovator Awards2
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
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 …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… research results (IRRs) and incidental findings (IFs) from genomic research. These issues are not new or unique to genomics, but advances in genomic technologies have brought them to the forefront. … of fields of human health research. However, the volume of genomic data, the potential for its broad application, and …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… the specific considerations associated with contributing genomic data. In addition to being personal and unique to every individual, genomic data may, for example: Be stored and used … seek consent for these activities. For instance, the NIH Genomic Data Sharing (GDS) policy expects that researchers …
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.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and out of, the … (CMS), and the Federal Trade Commission (FTC). Genetic and Genomic tests, like other types of diagnostic tests, can be … testing today, the growth of direct-to-consumer (DTC) genomic testing, and FDA's mounting concern that unregulated …
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.
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… Members  Erin M. Ramos, Ph.D., MPH Co-chair Division of Genomic Medicine  Barbara Thomas, Ph.D. (DAC Chair) Co-Chair … Core  Executive Secretary  Elena Ghanaim, M.A. Office of Genomic Data Science  … NHGRI Data Sharing Governance …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.