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- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Human Genome Reference Program (HGRP)1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)3
- Developmental Genotype-Tissue Expression (dGTEx)1
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… expectations. … In early 2020, NHGRI will require explicit consent for future research use and broad data sharing of all … who need to use human samples that lack explicit consent may submit an exception request with a brief … not affect the sharing or use of these data. … Explicit consent:  Explicit consent is a clear, affirmative response …
News Release
An expert panel from the Clinical Genome Resource (ClinGen) has critically reevaluated the scientific evidence for all 17 reported genes, disputing nine of the genes and revealing only three of the genes to be definitively associated with the most common form of the disease.
… inherited heart condition. However, the Clinical Genome Resource ’s (ClinGen) expert panel has critically reevaluated … National Institutes of Health. ClinGen is an NHGRI-funded resource that defines the clinical relevance or validity of … evidence did not exist. NHGRI developed the ClinGen resource to address this very issue. ClinGen’s expert panels …
Staff
Mr. Benjamin Berkman is the deputy director of NHGRI's Bioethics Core.
… … Benjamin Berkman, bioethics, Institutional Review Board, informed consent, human biological samples … Mr. Benjamin Berkman is …
News Release
NIH grants aim to gauge if genomics can be used to help diagnose diabetes, manage heart disease and guide cancer clinicians to the most effective drugs.
… two existing programs at Vanderbilt. The Pharmacogenomic Resource for Enhanced Decisions in Care and Treatment …
Clinical Research
The study collects genetic and medical information from people with GNE myopathy to understand the symptoms and clinical course of GNE myopathy.
… has evidence of a diagnosis of GNE Myopathy and signs informed consent, you may all participate. Furthermore, we can …
Research Funding
ClinGen will advance genomics in clinical care and improve our understanding of phenotypic and functional effects of genetic variants and their clinical value.
… of genes related to the specific disease domain Consent and Disclosures Recommendations Committee (CADRe) … Develop communication strategies for genetic testing consent and disclosure discussions to improve access to … of ClinGen through education, outreach, training, and resource development Gene Curation Erin Riggs Courtney …
Policies and Guidance
Text, graphics, videos, illustrations and other information on NHGRI websites are in the public domain, unless indicated.
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… available only for research purposes consistent with the consent provided by participants in the original study. Under … GDS policy is the expectation that researchers obtain the informed consent of study participants for the potential … to knowledge, Human Genome Project, GWAS policy, dbGaP, Informed consent … NIH issues a final Genomic Data Sharing …
News Release
The Clinical Sequencing Exploratory Research Consortium has offered an ethical framework to guide pediatricians in pursuing clinical sequencing studies.
… risk for disease in patients who are too young to give informed consent. … In a new analysis, a working group of the Clinical … and Society. By definition, young children cannot give informed consent for any medical procedure; very young …
Research at NHGRI
NHGRI researchers develop freely available software and analysis tools to help researchers around the world analyze and explore their genomic data.