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- Developmental Genotype-Tissue Expression (dGTEx)1
- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- Clinical Genome (ClinGen) Resource1
- Polygenic RIsk MEthods in Diverse populations (PRIMED) Consortium1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
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.
… three common population descriptors — race, ethnicity and genetic ancestry — which are often used to distinguish groups of … the public on the distinctions between race, ethnicity and genetic ancestry, and to advance the use of population …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… clinical applications or other uses. This page summarizes genetic and genomic privacy in these domains, along with … the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the … and can provide information regarding a person’s genetic ancestry or possible genetic risk for certain health …
Policy Issues
Participar en una investigación genómica es una oportunidad para apoyar la exploración cientÃfica del genoma.
… Ley Antidiscriminatoria sobre Información Genética ( Genetic Information Nondiscrimination Act , GINA) que prohÃbe …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… we will study some of this blood (or other tissue) and genetic material (for example, DNA) that already may have … blood or tissue sample, researchers will study your entire genetic sequence, known as your genome. The genome sequence … about disease and disability risk, paternity, or ancestry may be difficult for participants to understand and …
Policy Issues
Hay leyes y polÃticas que sirven para proteger la privacidad de la información genómica de un individuo.
… la Ley Antidiscriminatoria sobre Información Genética ( Genetic Information Nondiscrimination Act , GINA) para …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… does not include the study of population origins or ancestry. Use of the samples and data must be related to a … seems too narrow, or if it seems highly unlikely that genetic or genomic analyses would have been anticipated, the … and undue pressure upon family members to enroll in genetic or genomic studies. The IRB should determine the …
Policy Issues
Las pruebas genéticas se están convirtiendo en algo más común en la práctica clÃnica.
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… basic quality measures Level 3: Analysis to identify genetic variants, gene expression patterns, or other features …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… DNA in its natural form cannot be patented. … The earliest genetic patents were issued in 1982, following the U.S. … the profit from their investment. Patents issued for genetic technologies such as new methods of DNA sequencing … extremely valuable to those developing products based on genetic discoveries. However, when patents limit the use of …