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Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… to single nucleotide polymorphism (SNP) array data, genome sequence data, transcriptomic data, epigenomic data or … molecular data produced by array-based or high-throughput sequencing technologies. NHGRI's Expectation Under the Policy … … NOT-HG-21-022 : Notice Announcing the National Human Genome Research Institute’s Expectation for Sharing Quality …
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.
… - however, due to the rapid advances in next-generation sequencing (NGS) technology, the pervasiveness of clinical … Paper on Laboratory Developed Tests Next-generation sequencing (NGS) Draft Guidance Use of Standards in FDA …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… As genomic technologies have advanced and the  cost of sequencing has decreased , it has become feasible to produce … Lastly, although much has been learned about the human genome, there remains much to be discovered. Genomic … reported during clinical encounters that involve exome and genome sequencing. [2]  While the recommendations do not …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… technologies may render data identifiable, with 'whole genome sequencing' (WGS) first on the list of technologies to be … The preamble to the rule specifically notes that whole genome sequencing is expected to be one of the first …
Policy Issues
Hay leyes y políticas que sirven para proteger la privacidad de la información genómica de un individuo.
… , NDAR), y  el Atlas del genoma del cáncer  ( The Cancer Genome Atlas , TCGA). Para acceder a datos confidenciales de …
Policy Issues
Las pruebas genéticas se están convirtiendo en algo más común en la práctica clínica.
… de Investigación del Genoma Humano ( National Human Genome Research Institute , NHGRI) está realizando …
Policy Issues
Participar en una investigación genómica es una oportunidad para apoyar la exploración científica del genoma.
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.
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… Intramural Research   Lisa D. Chadwick, Ph.D. Division of Genome Sciences   Rene Sterling, Ph.D., M.H.A. Division of …