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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. … Researchers: Providing Access to Genomic Summary Results November 1, 2019 NIH seeks comment on proposal to …
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 … of Award issued in FY2022 as described in the FY23 Fiscal Policy . Small Business Innovation Research (SBIR) and Small … funded or conducted in whole or in part by NIH that results in the generation of scientific data must submit a …
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 … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
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 … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
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 … To facilitate the implementation of this NIH-wide policy, NHGRI is very flexible in the support of early stage …
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 … GSR and how? … What are the options under the NIH GDS Policy for sharing GSR? … Can approved data users share GSR …
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 … … Aggregate study information (including genomic summary results) and study analyses may be shared in the scientific … access to your own information. - Credit: NIH CoC Policy Page … Sample Informed Consent Language Aligned to …
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… and staff in the development and administration of study protocols that require NIH Institutional Review … Research Participants, Clinical Trials, Genetic Disorders, Return Of Results, Genetic Discrimination … The Protocol Service Center …
Clinical Research
The Institutional Review Board (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are … Research Participants, Clinical Trials, Genetic Disorders, Return Of Results, Genetic Discrimination … The Institutional Review …
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 … of the research participants (see Genomic Data Sharing Policy below). In addition, NIH issues Certificates of … the test, what the test attempts to determine, how the results will be used and in what state the testing takes …