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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
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 …
News Release
ASHG members selected Leslie G. Biesecker, M.D., a clinical and molecular geneticist and investigator with NHGRI, as their new president-elect for 2019.
Careers and Training
Professional development opportunities that empower educators, policymakers, and healthcare providers to broaden the impact of genomics in their fields.
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
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… sequencing of the human genome and identification of genetic markers for human diseases. While model organisms … in genomics research enables scientists to study human genetic variation, to identify the genetic underpinnings of … genetic information could raise questions around ancestry and family-ties that may disrupt the community …
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 …
Research Funding
Policies and guidance regarding research funding from the NHGRI and the National Institutes of Health.
About NHGRI
The Genomics and Society Working Group advises on planning and priorities for genomics and society activities at NHGRI.
… In Genomics, Genomics Legislation, Privacy And Genomics, Genetic Information Non-discrimination Act (GINA) … The …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… of Confidentiality. ​ … 21st Century Cures Act, genetic privacy, genomic privacy, researchers and privacy, …