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- Ethical, Legal and Social Implications (ELSI) Research Program6
- Genomics-Enabled Learning Health Systems (gLHS)1
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Genomic Innovator Awards1
- 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 out of, … criteria, adapted from the National Library of Medicine's Genetics Home Reference . Analytical Validity: Refers to how … task at hand. … Part of the FDA's mission is to protect public health by ensuring the safety, efficacy, and security …
Policies and Guidance
A list of reports, documents, workshop summaries and other works published by NHGRI.
… A list of reports, documents, workshop summaries and other works published by the National Human Genome Research Institute (NHGRI). … 2019 NHGRI Brochure A brochure that highlights … Advisory Council Report Certifying Compliance with the NIH Policy on Inclusion Guidelines The NIH mandate that women and …
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 …
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 … field (e.g., anthropology, bioethics, epidemiology, genetics and genomics, health education, law, medicine, …
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 … define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of …
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 … that describes the applicant's research interests in genetics and genomics as applied to health disparities …
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 … needed for the development of new tests, therapies, and cures. This page provides an overview of the Genetic … how the confidentiality of records will be maintained. NHGRI has developed an informed consent resource  for …
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 …
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 … on January 25, 2023. Broad data sharing promotes maximum public benefit from federally funded research, as well as …
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 … Vision, the National Human Genome Research Institute (NHGRI) charts a thoughtful scientific journey for the future … new treatment options to improve human health at-large. … NHGRI's Oral History Collection: Interview with Robert …