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News Release
Most pregnant women want recommendations from their doctors when deciding which information to receive from prenatal whole genome sequencing.
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… data to use data generated from sources with participant consent for unrestricted access or for General Research Uses through controlled access. Similarly, consent language should avoid restrictions on the types of … Data, Data Sharing, Data Repositories, Scientific Data, Informed Consent, Sharing Genomic Information, Protecting …
Staff
Dr. Sara Chandros Hull is a deputy scientific director in the Office of the Scientific Director and the director of NHGRI's Bioethics Core.
… projects focus on secondary genomic research findings, informed consent and datasharing for research for genomic research, … KE, Persaud A, Hull SC , Bonham VL (2020) The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… expectations. … In early 2020, NHGRI will require explicit consent for future research use and broad data sharing of all … who need to use human samples that lack explicit consent may submit an exception request with a brief … not affect the sharing or use of these data. … Explicit consent:  Explicit consent is a clear, affirmative response …
The Genomics Landscape
In the January 2020 edition of The Genomics Landscape, NHGRI Director Eric Green highlights the newly developed polygenic risk scores webpage, which provides graphical and textual information about polygenic risk scores, describes polygenic traits, introduces how polygenic risk scores can be calculated, and explains how such scores can be interpreted.
…  NHGRI will soon require its grantees to obtain explicit consent for future research use and broad sharing of all … on polygenic risk scores … NHGRI commits to explicit consent for broad sharing of human genomic data … Josh Denny …
Staff
Mr. Benjamin Berkman is the deputy director of NHGRI's Bioethics Core.
… … Benjamin Berkman, bioethics, Institutional Review Board, informed consent, human biological samples … Mr. Benjamin Berkman is …
News Release
NIH grants aim to gauge if genomics can be used to help diagnose diabetes, manage heart disease and guide cancer clinicians to the most effective drugs.
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 …
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 …