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- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)1
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program2
- Enhancing Opportunities in Computational Genomics and Data Science1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… How to Register Controlled-Access Studies  Study registration in dbGaP is required for … to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data or … … NOT-HG-21-022 : Notice Announcing the National Human Genome Research Institute’s Expectation for Sharing Quality …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… When conducting clinical research studies, scientists may discover new health-related … Lastly, although much has been learned about the human genome, there remains much to be discovered. Genomic … PubMed ] [5] Van Driest SL, Wells QS, Stallings S, et al. Association of arrhythmia-related genetic variants with …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… data use is consistent with those choices. For genomic studies involving the use of previously collected samples, … do not have [disorder]. You may learn something about your genome that relates to the health of your relatives. If so, … However, it is possible that the information from your genome, when combined with information from other public …
National Advisory Council for Human Genome Research
The Director's Report Related documents contain links to materials supplemental to Dr. Eric Green's Director's Report presentation to the National Advisory Council for Human Genome Research in September 2019.
… Bed Bug 101 Genomes from the Vertebrate Genomes Project 14 Genome Sequencing Program (GSP) GSP Website GSP Consortium … Clinical Sequencing Exploratory Research (CSER) Consortium Studies 22 Newborn Sequencing In Genomic Medicine and Public … iHMP Nature Collection HMP Data Coordination Center NIH-Wide Microbiome Workshop Report NIH-Wide Portfolio Analysis …
Policy Issues
En una decisión histórica en junio de 2013, el Tribunal Supremo determinó que el ADN en su forma natural no puede ser patentado.
… tribunal cuando la Asociación de Patólogos Moleculares ( Association of Molecular Pathologists ), la Unión Americana …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… however, it may not be practical or necessary for many studies. While informed consent is not required by federal … are generated through studies that include whole genome sequencing , whole exome sequencing, epigenetic … distinction between targeted genetic research and broader genome sequencing, so that participants understand the scope …
Explainer
Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.
… we do. Simply stated, the design of some genomic research studies has exacerbated scientific flaws due to how data are … ways in which people can differ from one another. A wide variety of population descriptors are used to describe … to look at the frequency of DNA variants across the genome. The definitions, measurement, uses and …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… Genome editing is currently being applied to research on … organisms such as mice or zebrafish. Researchers rely on genome editing tools as a way to explore the connection … help researchers determine if specific changes made to the genome contribute to the disease. It can also lead to the …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… to be stored in a research biobank and used for many studies. [OR] We are asking for your participation in a study … will study your entire genetic sequence, known as your genome. The genome sequence will be read and this information will be …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… to conduct epidemiological, population-based or other studies on wide-ranging topics such as infectious disease to birth … for genetic information, which can be explored in the Genome Statute and Legislation Database . The Common Rule …