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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 … criteria, adapted from the National Library of Medicine's  Genetics Home Reference . Analytical Validity: Refers to how …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… of genetic testing, payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests … and under what circumstances they should be covered. NHGRI hopes to serve as a resource for advancing genomic … Tests and Services  (HHS Secretary's Advisory Committee on Genetics, Health, and Society) An Evidence Framework for …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… standards available for qualitative interview data? NHGRI recognizes that methods for de-identification of qualitative data are developing, and existing tools may have limitations. NIH guidance refers … on de-identification from the Department of Health and Human Services NIST’s tools for de-identification …
Careers and Training
The Health Disparities Unit (HDU) in the Social and Behavioral Research Branch (SBRB) of the National Human Genome Research Institute (NHGRI) is recruiting a postdoctoral fellow interested in the study of the intersection of genomics, social determinants of health and health inequities.
… The Health Disparities Unit (HDU) in the Social and Behavioral Research Branch (SBRB) of the National Human Genome Research Institute (NHGRI) is recruiting a postdoctoral fellow interested in the … intersection of genomics, social determinants of health and health inequities specifically relating to the …
News Release
John Ohab, Ph.D., a neuroscientist and science communicator, has been named chief NHGRI's Communications and Public Liaison Branch.
… a nationwide search, John Ohab, Ph.D., a neuroscientist and science communicator, has been named chief of the Communications and Public Liaison Branch (CPLB) at the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH). In …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… genomic studies, including those submitting data to AnVIL and studies with an Alternative Data Sharing Plan.   Follow … study information needed for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ):   NHGRI’s Basic Study Information Template       Template for …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… Many Americans wonder if participating in genetics research or undergoing genetic testing will lead to being discriminated against based on their genetics. These questions may be the basis for why or why not … needed for the development of new tests, therapies, and cures. This page provides an overview of the Genetic …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… topics: Overview of the NIH Data Sharing Management Policy Application of the DMS Policy to ELSI Research Data sharing templates and resources Q&A from webinar participants For questions … NIH Data Sharing and Management Policy NHGRI’s Data Sharing Policies and Expectations NIH Frequently …
Research Training
This program provides doctoral and medical graduates the opportunity to use genomic approaches to advance the growing area of health disparities research
… The National Human Genome Research Institute (NHGRI) Intramural Health Disparities Postdoctoral Fellowship provides recent doctoral and medical graduates the opportunity to use genetic and … to work as postdoctoral fellows for up to three years in NHGRI Intramural research laboratories engaged in a wide …
About Genomics
February 15, 2021 marks the 20-year anniversary of publications reporting the draft human genome sequence.
… In February 2001,  Nature  and  Science  published two seminal papers that revealed the … sequencing costs, improved diagnosis of genetic disorders and genomic analysis in standard clinical practice. In its … Vision, the National Human Genome Research Institute (NHGRI) charts a thoughtful scientific journey for the future …