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- Ethical, Legal and Social Implications (ELSI) Research Program5
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)1
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
News Release
Fearful patients who received information about the role of genomics in obesity were less likely to take steps to improve health habits
… … New research suggests that fearful patients who received information about the role of genomics in being overweight viewed the information as threatening and were less likely to take steps … impact, she wanted to determine how to communicate information about genomics and weight so that patients are …
For Patients and Families
Genetic professionals provide information and support to individuals or families who have genetic disorders or may be at risk for inherited conditions.
… Genetic professionals work as members of health care teams providing information and support to individuals or families who have genetic disorders or may be at risk for inherited conditions. …
News Release
NHGRI plans to appoint Vence Bonham Jr., J.D., as acting deputy director, to elevate and accelerate efforts in diversity, inclusion and health equity.
The Genomics Landscape
In the June 2021 issue of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D. details the upcoming appointment of acting NHGRI Deputy Director, Vence Bonham Jr., J.D. and what it means for the institute.
… analyses of genome sequences and associated phenotypic information for millions of human participants will be … our current natural history study on patients with a rare genetic disease, familial platelet disorder. Our goals – … themes over the five days will include direct-to-consumer genetic testing, pharmacogenomics, cancer genomics, and rare …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… will support research that incorporates DNA sequence information into electronic medical records. The goal of … immune system. They will use DNA sequencing to examine the genetic make-up of 2,500 individuals and combine this … for disease-causing variants in the LDLR gene, the leading genetic cause of premature coronary artery disease, and …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… asking for your permission to collect samples and health information from you for a research study on [specific … we will study some of this blood (or other tissue) and genetic material (for example, DNA) that already may have … intentional or unintentional breaches of confidentiality. Non-federally funded investigators can also apply to obtain a …
Administrative
The Information Technology Branch provides leadership and service for information technology resources at NHGRI.
… The Information Technology Branch (ITB) provides leadership and service for all information technology (IT) resources for the National Human … and administrative support of computer networks. Information Resource Management ITB researches federal and IT …
Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
… Technological advances have made genetic and genomic tools faster, cheaper and more compatible with limited or older samples. Today, genetic information is used by law enforcement to investigate …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… assembling one million volunteer participants whose genetic information will be studied to help advance understanding … counselors and institutional review board members with non-scientist participant advocates. "Over the past five …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … samples and data must be for not-for-profit purposes or by non-commercial entities. Under some consent and governance … seems too narrow, or if it seems highly unlikely that genetic or genomic analyses would have been anticipated, the …