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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
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… form should reflect the research uses for which samples, genomic data, and health information might be shared. … to obtain consent for future uses and broad sharing of genomic and phenotypic data. For more information on genomic … study will be freely available in a public, unrestricted database that anyone can use. [For example], the 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.
… critical scientific issue that is important for advancing genomic science and improving healthcare across human … when other data are not available. … Advances in genomic medicine greatly amplify the urgency of ensuring the … research.  Ensure a more complete understanding of the diversity that exists across people who participate in …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… (Varshney, et al., 2015). The lab has also created a database called CRISPRz  that catalogs CRISPR targets 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.
… Technological advances have made genetic and genomic tools faster, cheaper and more compatible with … warning "your DNA can be taken and entered into a national database if you are ever arrested, rightly or wrongly, and … in or not opting out.  IGG does not currently maintain a database like CODIS. Genetic information used in the process …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… with the human genome would limit the integration of genomic medicine into health care because of either … the same types of impediments to the implementation of genomic medicine as a patent that is exclusively licensed. To … 2005 National Academies report Reaping the Benefits of Genomic and Proteomic Research: Intellectual Property Rights, …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… topics such as a brief description of the underlying genomic science, the study design, the diseases(s) or … [condition, if applicable]. We will store your samples, genomic data, and health information, and share them, now and … (OHRP) , institutional human research protection programs, database or biobank governance policies, and Institutional …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… ways of evaluating genetic tests for reimbursement. … Genomic medicine has the capacity to revolutionize clinical … covered. NHGRI hopes to serve as a resource for advancing genomic medicine by assisting all types of payers in their … by insurers. Visit NHGRI's Genome Statue and Legislation Database  to search for these laws state-by-state. … Overview …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… of insurance. Visit the Genome Statute and Legislation Database  to search for relevant state laws. The regulations … You may visit the Genome Statute and Legislation Database  to search for relevant state laws. … Genetic …