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- Multi-Omics for Health and Disease (Multi-Omics)1
- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program5
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… continuing to push the limits of existing DNA-synthesis technology to help understand how genomes work. One group of … beginning of the HGP and will continue to be researched as technology evolves and changes. Most scientists, ethicists … the Dual Use Research of Concern (DURC) policy. For more information about the biosecurity policies that NIH has in …
Policy Issues
Patients with genetic disorders and members of the public have diverse about germline genome editing.
… about two-thirds of U.S. adults have worries about the technology. Pew also found: The public is about evenly … " What's happening in genome editing right now ?" for more information on the summit. … [1] H.R.2029 - 114th Congress …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… characteristics, such as athletic ability or height. More information about the ethical concerns around genome editing … edits, and their effects are still unknown, even for a technology like CRISPR that is many times more precise than …
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.
… their study findings may apply. Researchers can obtain information about population descriptors in many ways, for … directly to consumers have combined genetic ancestry information with family history information. Regardless of the outcome of a genetic ancestry …
Policy Issues
Scientific institutions are developing recommendations to support the responsible use of human gene-editing research.
… governance, and issues related to equity and access to technology. On February 14, 2017, the committee published a … and ethical issues barring the wide application of this technology in germline therapy trials. The committee … currently conducts and funds research that uses CRISPR technology. For instance: NHGRI's Embryonic Stem Cell and …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… important to consider for genomics research since genomic information is hereditary and may reveal information about relatives. Consider talking to your family … to participate in research. Also ask the researcher what information might be discovered in the course of the study …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… There are many other examples of clinically useful information available through newly developed genetic tests. … that make it difficult for payers to do so. Without this information, insurers cannot properly assess how to reimburse … these concerns, there is a Federal law called the Genetic Information Nondiscrimination Act  (GINA) that prevents …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… please see Additional Resources . … Cornell Legal Information Institute This website allows users to search for … up to date. National Society of Genetic Counselors To find information about state genetic counselor licensing laws, …
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.
… The official website for U.S. federal legislative information. The site provides access to accurate, timely, and complete legislative information for Members of Congress, legislative agencies, … Offices involved in supplying legislative information to Congress.gov include the Secretary of the …