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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.
… consent language should avoid restrictions on the types of users who may access the data. NHGRI acknowledges that … primary study, if consistent with study design. When the policy applies NHGRI encourages sharing of all data types. However, at this time the NIH GDS Policy …
Policies and Guidance
For FY2023, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… Vision for Improving Human Health at the Forefront of Genomics ” in Nature . The development of this vision involved participation by many scientists in … research community, as well as other scholars and members of the public, and is overseen and approved by the National …
Policies and Guidance
For FY21, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… Vision for Improving Human Health at the Forefront of Genomics" in Nature . The development of this vision involved participation by many scientists in … research community, as well as other scholars and members of the public, and is overseen and approved by the National …
Policies and Guidance
For most of FY20, NHGRI’s extramural program will be operating under the 2011 National Human Genome Research Institute (NHGRI) strategic plan.
… The NHGRI is currently in the process of developing a new strategic plan which will be published in … and career - are being sought. NHGRI’s development of a strategic plan involves participation by many scientists … research community, as well as other scholars and members of the public, and is overseen and approved by the National …
Policies and Guidance
For FY22, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… Vision for Improving Human Health at the Forefront of Genomics” in Nature . The development of this vision involved participation by many scientists in … research community, as well as other scholars and members of the public, and is overseen and approved by the National …
Policies and Guidance
Frequently Asked Questions regarding the Update to NIH Management of Genomic Summary Results Access.
… Asked Questions regarding the Update to NIH Management of Genomic Summary Results (GSR) Access. … Genomic summary results (GSR) are the output of analyses of genomic data … because they refer to the unique pattern in the DNA code of a single participant, rather than calculations about the …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… encourages the broadest appropriate future use and sharing of genomic and phenotypic data. Example 1: Consent for General Research Uses (GRU) Portions of your samples, genomic data, and health information will be stored for an unlimited period of time to be used in future research. The research may be …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the … When conducting genomics research, two essential values of scientific research should be balanced: the need to share … of the research participants (see Genomic Data Sharing Policy below). In addition, NIH issues Certificates of …
About Genomics
In 2003, an accurate and complete human genome sequence was finished two years ahead of schedule and at a cost less than the original estimated budget.
… available to scientists and researchers two years ahead of the original Human Genome Project schedule and at a cost … in the human genome is considered by many to be one of the most ambitious scientific undertakings of all time, even compared to splitting the atom or going to …
The Genomics Landscape
In the December 2, 2021 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., spotlights the re-opening of the Genome: Unlocking Life’s Code exhibition at the Smithsonian’s National Museum of Natural History (NMNH) in Washington, D.C.
… a two-day virtual NHGRI symposium entitled “The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism” will begin. As I mentioned in the November issue of The Genomics Landscape, this symposium will examine the … therapies involving genomic modifications for dozens of genetic diseases. Speakers: Timothy Yu, M.D., Ph.D., …