Search Results
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.
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… ethical questions. Since children may not be able to consent to such a test and/or they might be unable to fully …
News Release
On March 16, Rep. Louise M. Slaughter (D-N.Y.), lead author of the Genetic Information Nondiscrimination Act of 2008 (GINA), passed away at the age of 88.
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research …