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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.
… 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 …
Event
On October 25-29, 2022, the National Human Genome Research Institute (NHGRI) will participate in the ASHG Annual Meeting - the world's largest human genetics and genomics meeting and exposition.
… Hall 3:00 p.m. — 4:45 p.m Complex Traits Sequencing-based genome-wide association study of triglycerides in East Africans Board No. …
News Release
Cari Young and Julie Nadel join NHGRI as public policy and education fellows.
… said. In September, Ms. Young will join the National Human Genome Research Institute (NHGRI) as the 14th American … Program in Baltimore, Maryland. During her undergraduate studies at Kenyon College in Gambier, Ohio, Ms. Young … conduct research on RNA, DNA hybrid structures and genome-wide datasets at both the undergraduate and graduate levels. …
Event
On May 19-20, 2016, the National Human Genome Research Institute (NHGRI) hosted a two-day workshop where participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users.
…   Roster of Participants … NIH Background Fact Sheet on GWAS Policy Update Workshop on Establishing a Central Resource of Data from Genome Sequencing Projects Report Resolving Individuals … Materials … On May 19-20, 2016, the National Human Genome Research Institute (NHGRI) hosted a two-day workshop …
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 …
News Release
NHGRI researchers will present four platform talks and 55 posters to highlight the institute's diverse portfolio at the 65th annual meeting of ASHG.
… Britny Kish … National Human Genome Research Institute (NHGRI) researchers will present … Diseases Program approach to prioritizing variants from genome-scale sequencing. (Bioinformatics and Genomic … Anthony M. Musolf: Linkage Analyses Reveals Significant Association for Myopia. (Statistical Genetics and Genetic …
Event
The Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC-PEG) held its ninth in-person meeting on February 25, 2020, in Bethesda, Maryland.
… Director, Cytogenetics Legacy Laboratory Services; Association for Molecular Pathology (AMP) Christina … Clinical Genetics Program Hemin Chin* NIAAA Eriko Clements Association for Molecular Pathology Heather Collins NLM … of Didactic Education Department of Physician Assistant Studies, GWU Nguyen Roche NIDDK Sara Rogers Director of …
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 …