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News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… One goal of the 21st Century Cures Act, enacted December 13, 2016, was … information that is collected from participants as part of federally-funded research. … To implement one of the law's privacy provisions, the National Institutes of Health (NIH) put forth a new policy which requires that all NIH-funded investigators who …
Research Funding
Policies and guidance regarding research funding from the NHGRI and the National Institutes of Health.
… The National Institutes of Health (NIH) Grants Policy Statement is the definitive resource for grants policy. Those interested in applying for a specific grant … and the general public for responsible stewardship of federal research dollars. Sound management of research …
Administrative
NHGRI branch responsible for policy development and analysis related to advances in genomics research.
… The Policy and Program Analysis Branch (PPAB) of the Division of Genomics and Society conducts policy development and … grantees and other external stakeholders, to address policy matters related to human genetics and genomics. PPAB promotes policies that facilitate the uptake of genomic technologies into the clinic and broader society, …
About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… NHGRI is committed to driving the responsible use of genomics in society in order to advance knowledge and ensure that genomics benefits the health of all humans. To do this, we consider the ethical, legal, and social aspect of genomics research in our work, including these key issues. …
Policies and Guidance
This page provides an overview of Resource Sharing Plans, a required document in most NIH funding applications. Most applicants for NIH funding must provide a Resource Sharing Plan (RSP) documenting plans for sharing resources that result from their federally funded work. NIH Policies that govern the sharing of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy.
… What types of resources should be addressed in a Resource Sharing Plan? … Please review the NIH webpage on the Research Tools Policy for the NIH definition of “research tools,” principles of disseminating research … NHGRI guidelines for conscientious sharing of resources NHGRI encourages researchers to consider …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… data? NHGRI recognizes that methods for de-identification of qualitative data are developing, and existing tools may … Guidance on de-identification from the Department of Health and Human Services NIST’s tools for … the National Cancer Imaging Archive The National Library of Medicine's clinical text de-identification tool In some …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… follows the NIH’s expectation for submission and release of scientific data, with the following exception: for genomic … non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as … Level 1: Initial sequence reads, the most fundamental form of the data after the basic translation of raw input Level 2: …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… The webinar will focus on the following topics: Overview of the NIH Data Sharing Management Policy Application of the DMS Policy to ELSI Research Data sharing templates and … AnVIL Budget for Data Management and Sharing Complete List of NIH Activity Codes Subject to the DMS Policy (PDF) …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… The final version of the Common Rule was published in the Federal Register on January 19, 2017, following the publication of a Notice of Proposed Rulemaking (NPRM) on September 8, 2015. The … with the new rules will begin one year after publication of the Final Rule, on January 19, 2018. Compliance with …
Policies and Guidance
For FY2024, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… a Diverse Genomics Workforce Action Agenda . Development of resources, approaches, technologies that accelerate and support studies focused on the structure and biology of genomes, as applied broadly to many biological systems or … Functional genomics and functional characterization of genomic variation. Genomics of disease. Implementation and …