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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 Program7
- 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
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… of states that have enacted legislation on the topics in the database, together with a description of each topic. The Genome Statute and … Glossary of Statutory, Legislative,and Regulatory Terms . For other helpful links and legislative databases, please see …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… is reviewed and updated monthly. Searchable topics in the database include employment and insurance … Glossary of Statutory, Legislative, and Regulatory Terms . For other helpful links and legislative databases, please see … type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute …
Policy Issues
Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.
… Genome editing is a method that lets scientists change the DNA of many … because animals have many of the same genes  as humans. For example, mice and humans share about 85 percent of their …
About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… NHGRI is committed to driving the responsible use of genomics in society in order to advance knowledge and ensure that genomics …
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 a field of science that involves redesigning organisms for useful purposes by engineering them to have new … have access to them? What are the environmental impacts of introducing modified organisms into the ecosystem? Such …
Policy Issues
Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing
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… Techniques to modify DNA in the genome have existed for several decades, but the conversation about the science … such as CRISPR, to conduct their investigations. A robust understanding of how the genome gives rise to health … disease treatments. Homologous recombination The earliest method scientists used to edit genomes in living cells was …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… clinical research studies, scientists may discover new health-related information about volunteers who have … This raises the question of when and how it is appropriate for the scientists to look for and share such research … and inform future NHGRI policy. … IRRs are the results for a specific study participant from a scientific investigation. …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… basic biology underlying disease, as well as to discover new possible therapeutic targets. Although excitement about the potential for gene therapy has grown tremendously since the discovery … or zebrafish. Researchers rely on genome editing tools as a way to explore the connection between genotype  (genes) …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… should be respected when their genomic information is used for research, clinical applications or other uses. This page … twins, each person’s DNA sequence is unique, which means a DNA sample can never be truly anonymized. To advance … clinical benefits to the patient; however, it introduces new risks to patient privacy, and patients are potentially …
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
… generations. … The debate about genome editing is not a new one but has regained attention following the discovery … researchers generally believe that human genome editing for reproductive purposes should not be attempted at this …