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Policies and Guidance
Guidance describing NHGRI’s position on appropriate third-party involvement.
… sharing data and resources, accessing data, participant privacy and data protection, meeting quality metrics for data …
News Release
NIH awarded grants to six medical centers to select from the most difficult-to-solve medical cases and develop effective approaches to diagnose them.
… data sharing will observe standards of patient privacy, confidentiality and management of health …
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… - DNA Family Stories Smarter Every Day - DNA Testing and Privacy (Behind the Scenes at the 23andMe Lab) NPR's Code …
Research at NHGRI
The Immersive Simulation Program (ISP) provides expertise, tools, and support for the integration of emerging technology-based methods into health and medical research.
… clinical trials Considering models for protecting user privacy in VR … Capacity-building research We conduct pilot, …
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.
… information and should factor the consideration of privacy in the development of their Resource Sharing Plan.  …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… Investigators are not expected to share data if 1) the privacy or safety of research participants would be … adequate protection of research participants, maintain privacy, and mitigate risk. NHGRI recognizes that methods for … the scope or extent of sharing and future research use privacy or safety of research participants would be …
FAQ
On July 20, 2023, the National Human Genome Research Institute (NHGRI) hosted a pre-application webinar for the Human Genome Reference Program (HGRP) Informatics Tools for the Pangenome Notice of Funding Opportunity (NOFO): RFA-HG-23-026. We collected the questions and answers from the webinar to help applicants.
… partners, which may raise data sovereignty and privacy challenges. One example of a potential application is …
Funding Opportunities
Funding Opportunities for Investigator-Initiated Research in Computational Genomics and Data Science
The Computational Genomics and Data Science Program Announcements (PARs) invite applications for investigator-initiated research efforts fostering innovation in computational genomics, data science, statistics, bioinformatics, and data visualization and exploration.
… quantify genomic information leakage and file formats for privacy preservation HG010749 LI, WEI CHILDREN'S RESEARCH … WANG, XIAOFENG TRUSTEES OF INDIANA UNIVERSITY Secure and Privacy-preserving Genome-wide and Phenome-wide Association …
National Advisory Council for Human Genome Research
The Director's Report-Related Documents contain links to materials supplemental to Dr. Eric Green's Director's Report presentation to the National Advisory Council for Human Genome Research in February 2023.
… DUOS Website Broad Institute DUOS Website 36 iDASH Genomic Privacy Challenge 2022 iDASH Challenge Website Harmanci et … Provides Secure Imputation Services with Provable Genomic Privacy" UK-US PETS Prize Challenge 37 Clinical Sequencing …
News Release
Scientists are exploring the genomic and clinical profiles of people with RUNX1 familial platelet disorder.
… and was diagnosed with RUNX1-FPD.  *last name omitted for privacy … Although researchers have known for more than 20 …