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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
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… do not have [disorder]. You may learn something about your genome that relates to the health of your relatives. If so, … SC. Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research Pediatrics . 2013 … However, it is possible that the information from your genome, when combined with information from other public …
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… to look at the frequency of DNA variants across the genome. The definitions, measurement, uses and …  National Human Genome Research Institute. Workshop on the Use of Race and …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… The Genome Statute and Legislation Database is comprised of state … the 2002-2024 U.S. state legislative sessions. … The Genome Statute and Legislation Database is reviewed and … for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… revolutionize clinical practice. The mapping of the human genome has created new opportunities for genetic tests to … up with the volume of new genetic and next-generation sequencing tests that are coming onto the market. … prevent genetic discrimination by insurers. Visit NHGRI's Genome Statue and Legislation Database  to search for these …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… decision-making for the responsible use of human genome-editing research. … In light of recent advances in … community leaders and policy makers. NHGRI uses the term "genome editing" to describe techniques used to modify DNA in the genome. Other groups also use the term "gene editing". In …
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.
… single nucleotide polymorphisms (SNPs) that span the genome. In comparison, traditional profiling methods like …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… will study your entire genetic sequence, known as your genome. The genome sequence will be read and this information will be … the research will (if known) or might include whole genome sequencing (i.e., sequencing of a human germline or somatic …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… synthetic biology is similar to another approach called " genome editing " because both involve changing an organism's … long stretches of DNA and insert them into an organism's genome. These synthesized pieces of DNA could be genes that … in other organisms or they could be entirely novel. In genome editing, scientists typically use tools to make …
Policy Issues
This glossary contains definitions for commonly used terms (such as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database.
… as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database. … Bill: The principal … as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database. … This glossary … as "bill", "statute", "regulation" and more) found in the Genome Statue and Legislative Database. … Policy Issues …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… are generated through studies that include whole genome sequencing , whole exome sequencing, epigenetic profiles, … distinction between targeted genetic research and broader genome sequencing, so that participants understand the scope …