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- Developmental Genotype-Tissue Expression (dGTEx)1
- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- 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
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and out of, the clinic. Yet most genetic tests today are not regulated, meaning that they go … Regulation Of Genetic Tests, Genetic Testing, 23andMe, Ancestry, Health Information From Genetic Testing … Most …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… For patients to have full access to the benefits of genetic testing, payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement. … Genomic medicine has the … of the human genome has created new opportunities for genetic tests to predict, prevent and treat disease. Tests …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… wonder if participating in genetics research or undergoing genetic testing will lead to being discriminated against … and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and … what protections GINA does and does not offer. … The Genetic Information Nondiscrimination Act (GINA) of 2008 …
Policy Issues
Patients with genetic disorders and members of the public have diverse about germline genome editing.
… Patients with genetic disorders and members of the public, both in the … germline genome editing should be used to prevent or treat genetic disorders. … Patients, patient advocates, and families of patients with genetic disorders have diverse views on whether germline …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… can go through before becoming a law. The history of the Genetic Information Nondiscrimination Act  (GINA), a law that … a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an … a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an …
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 limited or older samples. Today, genetic information is used by law enforcement to investigate criminal acts. The legal system also uses genetic information to exonerate those who have been …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… team keeps this database up to date. National Society of Genetic Counselors To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute 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.
… results could tell you information about disease risk, ancestry, and family relationships. Is it safe to participate … In addition to taking steps to protect the privacy of your genetic information, there is a Federal law called the Genetic Information Nondiscrimination Act (GINA) that …
Policy Issues
Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.
… editing " because both involve changing an organism's genetic code; however, some people draw a distinction between … have new abilities. ​ … Synthetic Biology, Synthetic DNA, Genetic Engineering, Gene Editing, Genome Editing … Synthetic …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… IFs. … Currently, the only federal law regarding return of genetic IRRs and IFs is the Clinical Laboratory Improvement … plays a currently ambiguous role regarding the return of genetic IRRs and IFs in non-CLIA certified labs. One HIPAA … that the dearth of data on populations of non-European ancestry makes predicting risk in these populations …