Search Results
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.
… 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 and NHGRI implementation plans apply particularly to … with other data sets. Projects that are subject to the GDS Policy NHGRI finds value in and encourages the sharing of …
Event
NHGRI hosts a virtual Q&A with science journalist Angela Saini, author of “Superior: The Return of Race Science” on Thursday, July 23, 2020.
… Angela Saini is an independent British science journalist and author. She presents radio and … of belief in biological racial differences in the world of science. If the vast majority of scientists and scholars … of the insidious and destructive nature of race science—and a powerful reminder that, biologically, we are …
Fact Sheet
Genomic data science is a field of study that enables researchers to use powerful computational and statistical methods to decode the functional information hidden in DNA sequences.
… The Big Picture Genomic data science is a field of study that enables researchers to use … to decipher the information it contains, so genomic data science will be a vibrant field of research for many years to come. Performing genomic data science carries with it a set of ethical responsibilities, as …
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.
… access to your own information. - Credit: NIH CoC Policy Page … Phenotypic Data Subject to the NIH Genomic Data Sharing Policy … It's also important to remember that the GDS Policy does not prevent or disqualify participants from … GDS Policy Sample Informed Consent Language …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… of the research participants (see Genomic Data Sharing Policy below). In addition, NIH issues Certificates of … Database . The Common Rule Published in 1991, the Federal Policy for the Protection of Human Subjects, also known as … genotypes and phenotypes (dbGaP), the NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-Space …
News Release
John Ohab, Ph.D., a neuroscientist and science communicator, has been named chief NHGRI's Communications and Public Liaison Branch.
… nationwide search, John Ohab, Ph.D., a neuroscientist and science communicator, has been named chief of the … CPLB is part of the Division of Policy, Communications, and Education (DPCE), whose mission … important position wide-ranging work experience, a hard science background and the tremendous energy needed to tell …
Event
Identifying the ELSI challenges raised by Citizen Science in the context of biomedical research and identify ways for the NIH to address these ELSI issues.
… Ethical, Legal and Social Implications (ELSI) of Citizen Science … Ethical, Legal and Social Implications of Citizen Science … Identifying the ELSI challenges raised by Citizen Science in the context of biomedical research and identify … Identifying the ELSI challenges raised by Citizen Science in the context of biomedical research and identify …
The Genomics Landscape
In the April 2024 issue of The Genomics Landscape, NHGRI Director Eric Green details how the Office of Genomic Data Science (OGDS) is becoming the epicenter for genomic data science at the institute, with numerous collaborations, projects and activities.
… lecture will be given by Joe Palca, Ph.D., a former NPR science correspondent and founder of Scicommers, a collective of science communicators. I encourage you to attend, and please … of the field, NHGRI established the Office of Genomic Data Science (OGDS) a little over two years ago. Directed by …
The Genomics Landscape
In the February 2, 2023 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the new NIH Data Management and Sharing (DMS) Policy and how it emphasizes the importance of good data management practices.
… date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. The DMS Policy emphasizes the importance of good data management … data to explore new frontiers of discovery. Though the policy was published two years ago, many may still be unsure …
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.
… Please review the NIH webpage on the Research Tools Policy for the NIH definition of “research tools,” principles … spanning the various research areas (e.g., genomic science, genomic medicine, ELSI research), produces research … Conda CRAN Dockstore PyPi Figshare Github GitLab Open Science Framework Software Heritage(for long-term archiving) …