Search Results
Secondary Genomics Findings Service
Responsibilities as a PI, consent, type of data accepted, and how to apply
… Provide staff who are adequately trained to perform the informed consent for secondary findings and who can enter CRIS orders. … some suggested language to incorporate into protocols and consent forms. As with all parts of your consent form, it is …
News Release
Most pregnant women want recommendations from their doctors when deciding which information to receive from prenatal whole genome sequencing.
News Release
NIH expands its Encyclopedia of DNA Elements Project, which is creating a fundamental genomics resource scientists to study human health and disease.
… Project, which is generating a fundamental genomics resource used by many scientists to study human health and … this foundation by expanding the breadth and depth of the resource." Since launching in 2003, ENCODE has funded a … center, which houses the data and provides access to the resource through an open-access portal, and a data analysis …
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 …
News Release
NIH will award $38.5 million over five years to the Developmental Genotype-Tissue Expression (dGTEx) project, which aims to build a widely available resource of human developmental gene expression in a multitude of tissues for use in basic and clinical research.
… over 900 adult postmortem donors. It also established a resource for researchers to explore gene expression in many … with genomic diseases. To work toward completing the resource, NIH will award $38.5 million over five years to the … centers will also oversee and manage the project. “The resource created by the dGTEx project could have huge …
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 …
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
An expert panel from the Clinical Genome Resource (ClinGen) has critically reevaluated the scientific evidence for all 17 reported genes, disputing nine of the genes and revealing only three of the genes to be definitively associated with the most common form of the disease.
… inherited heart condition. However, the Clinical Genome Resource ’s (ClinGen) expert panel has critically reevaluated … National Institutes of Health. ClinGen is an NHGRI-funded resource that defines the clinical relevance or validity of … evidence did not exist. NHGRI developed the ClinGen resource to address this very issue. ClinGen’s expert panels …
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.
… two existing programs at Vanderbilt. The Pharmacogenomic Resource for Enhanced Decisions in Care and Treatment …