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News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… Office of Science Policy … with access to genomic data. The National Institutes of Health (NIH) Genomic Data Sharing Policy establishes a system to promote data sharing, while … genomics studies. Today, we need your help to improve one of NIH's central data sharing tools for human genomic data, …
Policies and Guidance
Guidance describing NHGRI’s position on appropriate third-party involvement.
… and contract-recipients sometimes seek or receive offers of support from companies or other third parties (e.g., … after the grant or contract has been awarded. This type of third-party support, or “third-party involvement”, may be … studies and contracts, so long as the primary purpose of the studies and contracts is not compromised and National …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… a bill can go through before becoming a law. The history of the Genetic Information Nondiscrimination Act (GINA), a law that was passed in 2008 and impacts the field of genomics, provides an excellent example of the legislative process in action. … Step 1: The bill is drafted Any member of Congress – either from the Senate or the House or …
News Release
Over the last 20 years, three families have been unknowingly linked to one another by an unknown illness. Researchers at the National Human Genome Research Institute (NHGRI) and other organizations have now identified the cause of the illness, a new disease called CRIA syndrome. The results of their work were published on Dec. 11 in the journal Nature.
… the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health, and other organizations have now identified the … of the illness, a new disease called CRIA syndrome. The results were published in the journal Nature . … Daniel Kastner, M.D., Ph.D., a pioneer in the field of autoinflammatory diseases, and his team discovered CRIA, …
Policy Issues
Hay leyes y políticas que sirven para proteger la privacidad de la información genómica de un individuo.
… de la Oficina Federal de Investigaciones ( Federal Bureau of Investigation , FBI) para las bases de datos de ADN de la … Protección de Seres Humanos en Investigaciones ( Federal Policy for the Protection of Human Subjects ), también conocida como la " Regla Común …
Policy Issues
Participar en una investigación genómica es una oportunidad para apoyar la exploración científica del genoma.
… los Institutos Nacionales de la Salud (National Institutes of Health, NIH) en su misión de entender, prevenir, detectar … Policy Issues …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… were issued in 1982, following the U.S. Supreme Court case of Diamond vs. Chakrabarty, which opened the door to … patenting biotechnology discoveries. Since then, the core of the debate over gene patents has been whether or not the … databases within 24 hours of being generated. This policy of open access to the genome has been a core ethos of …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… is an opportunity to support scientific exploration of the genome and to help NIH in its mission to understand, … may also gain some individual benefit, such as diagnosis of a disease or access to a treatment in development. … A wide range of genomic research studies need participants, each with …
Policies and Guidance
NHGRI is committed to maintaining a work environment that is courteous, respectful, and free from harassing behaviors for its employees, contractors, volunteers, interns and visitors.
… on (301) 402-4845 File an EEO complaint through the Office of Equity, Diversity, and Inclusion at www.edi.nih.gov/resolutions Contact the Office of Intramural Training and Education if you are a trainee or … NIH Climate Survey Results - November 2019 General Facts of the Survey for NHGRI NIH Workplace Climate and Harassment …
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.
… information to exonerate those who have been convicted of crimes they did not commit. This page provides information on the method and scope of these new techniques and tools, along with a discussion of their ramifications with respect to privacy. … The Combined DNA Index System (CODIS) is the Federal Bureau of Investigation’s (FBI) program of support and software for …