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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
NHGRI plans to appoint Vence Bonham Jr., J.D., as acting deputy director, to elevate and accelerate efforts in diversity, inclusion and health equity.
… director on genomics and health disparities and as head of the Health Disparities Unit in NHGRI’s Social and … health equity and related areas, especially in light of his vast expertise as a researcher and social scientist, … to coordinate efforts across groups to bring change.” One of Bonham’s first responsibilities as acting deputy director …
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 … At the federal level, the Genetic Information and Nondiscrimination Act of 2008 (GINA) prohibits the use of …
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.
… M.D., Ph.D. … Last month, NHGRI convened the 93rd meeting of the National Advisory Council for Human Genome Research . … 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 – …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… Benowitz … A dozen awards from the National Institutes of Health 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 …
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 … LAN and WAN connections and administrative support of computer networks. Information Resource Management ITB …
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 … information to exonerate those who have been convicted of crimes they did not commit. This page provides information …
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
… studies are increasingly integral to the advancement of a spectrum of disease-based research. As knowledge … assembling one million volunteer participants whose genetic information will be studied to help advance understanding …
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 … seems too narrow, or if it seems highly unlikely that genetic or genomic analyses would have been anticipated, the … the Health Insurance Portability and Accountability Act (HIPAA) protects confidentiality for 50 years after …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… remain about ethical, legal and social implications of the technology. People who are seriously ill may … and hopefully do a better job of pinpointing what kinds of information will be most useful to potential research … children with the disease. These participants completed a genetic literacy survey, watched an educational video about …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… It is essential to respect the rights and interests of research participants, given that their contributions, such as samples and health-related information, are critical for the success of most human … storage and use of data. It may be useful to involve genetic counselors in the informed consent process, either …