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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.
… Elements Outlined by NIH Guidance   Genomic and phenotypic data, and any other data relevant for the study (such as exposure or disease … future use and sharing of genomic and phenotypic data.   Example 1: Consent for General Research Uses (GRU)   …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024. ​
… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human Genome Research … and program matters, she oversees the branch’s policy analysis related to the ethical, legal and social … Institute until June 2024. … Elena Ghanaim, NIH Genomic Data Sharing (GDS) Policy, Informed Consent, health privacy …
Staff
Valentina Di Francesco is NHGRI's Chief Data Science Strategist and Director of the Office of Genomic Data Science within the NHGRI Office of the Director.
… Valentina Di Francesco is NHGRI's first Chief Data science Strategist and Director of the Office of Genomic Data Science. In this role, she will provide leadership, … organism databases, and the NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-Space ( AnVIL ) …
The Genomics Landscape
In the January 13, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., announces the appointment of Valentina Di Francesco as founding director of the NHGRI Office of Genomic Data Science.
… move into 2022, stay safe and healthy! All the best,   … Data sharing is central to the field of genomics. Both human and non-human genomic data have been widely shared through public data resources, … and Xenbase ), and cloud repositories [e.g., the NHGRI Analysis, Visualization, and Informatics Lab-space (AnVIL)], …
Event
Several NIH Institutes, Offices and Centers partnered to host a two-day virtual workshop on May 28-29, 2024, to further explore the recommendations from the National Academies of Sciences, Engineering and Medicine (NASEM) 2023 report, Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field, with regards to legacy genomic data. 
… and consider how they relate to the ongoing use of legacy data;  Summarize current approaches to the use of population descriptors in/for legacy data;    Define challenges with current approaches to harmonization, interoperability and analysis, including genetic similarity;   Address challenges …
News Release
NHGRI has selected Adam Phillippy, Ph.D. as the founding director of the new Center for Genomics and Data Science Research within the Institute’s Intramural Research Program.
… the founding director of the new Center for Genomics and Data Science Research within the Institute’s Intramural … NHGRI to lead the burgeoning computational genomics and data science fields,” said Charles Rotimi, Ph.D., Scientific … himself as an expert in genome sequence assembly and analysis not only within NIH but in the broader scientific …
The Genomics Landscape
In the January 2024 issue of The Genomics Landscape, NHGRI Director Eric Green announces the appointment of Dr. Adam Phillippy as the founding director of the Center for Genomics and Data Science Research (CGDSR).
… was “how can NHGRI’s IRP be a recognized leader in genomic data science?" Ongoing advances in genomics tools and … included the creation of a new program focused on genomic data science, which directly led to the establishment of the … NHGRI, Dr. Phillippy worked at the National Bioforensic Analysis Center, where he founded and led a bioinformatics …
Event
NHGRI holds a pre-application webinar for potential applicants on the Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 1, 2023 at 2:00 pm ET.
… Broadening Opportunities for Computational Genomics and Data Science Education NOFO … NHGRI holds a pre-application … Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 1, 2023 at 2:00 pm … Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 1, 2023 at 2:00 pm …
Research Funding
Coordinates activities across the Genome Sequencing Program components
… activities including: Tracking genome sequencing and analysis costs; data production and deposition; project completion Being a … Center will play a key scientific role by improving data availability and leading various data analyses efforts. …
OGDS
NHGRI held a second pre-application webinar for potential applicants on the Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 27, 2023 at 2:00 pm ET.
… Broadening Opportunities for Computational Genomics and Data Science Education NOFO … NHGRI held a second … Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 27, 2023 at 2:00 pm … Broadening Opportunities for Computational Genomics and Data Science Education NOFO on September 27, 2023 at 2:00 pm …