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- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
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 … Clinical Utility: Refers to whether the test can provide information about diagnosis, treatment, management, or … FTC’s primary mission is to enforce Section 5 of the FTC Act, which prohibits unfair or deceptive trade practices. A …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… Benowitz … Four new grants from the National Institutes of Health will support research on the ethical, legal and … research and the increasing availability of genomic information. The awards will fund researchers at … The work builds on previous NHGRI-supported research.  Genetic Privacy and Identity in Community Settings …
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 … team keeps this database up to date. National Society of Genetic Counselors To find information about state genetic … Genome Project, Genetic Information Non-discrimination Act, GINA, Genetic Disease, Workplace Discrimination, Laws …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… and comprehension can be achieved in a variety of ways.  Genomics research requires careful explanation about how the participant’s genomic information will be used during and after the study, as well … that must be met during this process are: providing key information. confirming the participant understands the …
Clinical Research
The study collects genetic and medical information from people with GNE myopathy to understand the symptoms and clinical course of GNE myopathy.
… The Natural History Study of Patients with GNE Myopathy collects genetic and medical information from people with GNE myopathy. Patients are …
15 Ways Genomics Influences Our World
Genomics is fostering an appreciation for what our DNA means for our health, identities and culture.
… many issues regarding the social context of genomics. Information about our genomes is starting to become part of … is for? Let's say that one of your parents learns from a genetic test that they have Huntington's disease , which is … President Bush signed into law the Genetic Information Nondiscrimination Act  (or GINA for short). This law is now …
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 Genomics and Society Working Group advises …
Policies and Guidance
NHGRI ensures that our website is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d).
… Institute (NHGRI) makes every effort to ensure that the information available on our website is accessible to all users and is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d). … Section 508 requires that all …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… conduct hearings on the accomplishments and needs of HHS and the NIH before the agency budget requests are … the entire genomes of other organisms; ongoing research in genetic science and technology; and a broad program that … creation of policy recommendations on the use of genetic information. The NHGRI budget provides funding for a dynamic …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… regulations may not require informed consent for all kinds of genomics research (e.g., if the samples or data are … Additionally, HIPPA and the Common Rule permit research on information from deceased individuals who did not provide … The Health Information Portability and Accountability Act (HIPAA) Privacy Rule mandates that individuals or …