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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
This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.
… What types of resources should be addressed in a Resource Sharing Plan? … Please review the NIH webpage on the Research Tools Policy for the NIH definition of “research tools,” principles of … that need to be addressed in the Resource Sharing Plan. Resources that should be addressed in NHGRI Resource Sharing …
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 benefits the health of all humans. To do this, we consider the ethical, legal, and social aspect of genomics research in our work, including these key issues. … …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… This webpage discusses genomics-relevant considerations for informed consent and provides guidance on how to approach … in some fields . To help address this issue, the NIH has resources regarding research involving individuals who are …
Policy Issues
Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.
… because animals have many of the same genes as humans. For example, mice and humans share about 85 percent of their … Institute (NHGRI) are doing just this. The Burgess lab , for example, is studying zebrafish genomes. Scientists in … … In the Laboratory … Treating Disease … Additional Resources … What is genome editing? … Genome editing is a …
Policy Issues
Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing
… Techniques to modify DNA in the genome have existed for several decades, but the conversation about the science … have had the knowledge and ability to edit genomes for many years, but CRISPR technology has brought major … creating targeted mutations to the genome. 5 Large-scale genomics projects that once took many years and tens of …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… sessions. … NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have … Glossary of Statutory, Legislative,and Regulatory Terms . For other helpful links and legislative databases, please see Additional Resources . … Cornell Legal Information Institute This …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… targets. Although excitement about the potential for gene therapy has grown tremendously since the discovery … there are proposals to use genome editing as a treatment for disease. Many diseases from cancer to asthma have genetic … research and commercial labs around the world. Treatments for HIV and cancer are being tested in clinical trials in …
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
… researchers generally believe that human genome editing for reproductive purposes should not be attempted at this … Summit on Human Gene Editing in Washington, DC. For more information on this summit, see What's happening … the approaches, objectives and global society. Brief Funct Genomics, 16(1), 46-56. doi:10.1093/bfgp/elv053 [8] Park, A. …
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 … debate whether we need further measures. … When conducting genomics research, two essential values of scientific … a DNA sample can never be truly anonymized. To advance genomics research, NIH houses several databases where …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… Participating in genomics research is an opportunity to support scientific … to commit? This very much varies from study to study. For any study you are considering, it is important that you … identifying studies for which you are eligible. Below are resources providing detailed information on research …