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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.
… such as your name, address, telephone number, or social security number, it may be possible to identify you … access to your own information. - Credit: NIH CoC Policy Page … Sample Informed Consent Language Aligned to … Phenotypic Data Subject to the NIH Genomic Data Sharing Policy … This page of the Informed Consent Resource provides …
Staff
Dr. Dave Kaufman is a program director Division of Genomics and Society at the National Human Genome Research Institute.
… development grants related to the ethical, legal and social implications of genomic research. Dr. Kaufman serves … … Dave Kaufman, Ph.D. … Dave Kaufman, return of results policy, ethical legal and social implications, genomic information, citizen science … …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the GDS policy's data management practices would help support NIH's … NIH chief of staff and associate director for science policy, and NHGRI director, Dr. Eric Green. Additionally, …
Staff
Dr. Laura Koehly is the chief of and senior investigator in the Social and Behavioral Research Branch at the National Human Genome Research Institute.
… M. Koehly, Ph.D., is chief and senior investigator in the Social and Behavioral Research Branch, National Human Genome … Dr. Koehly's research focuses on developing and applying social network methods to the study of complex social systems, such as families and communities. Her …
Research Funding
The three research domains to be considered for support by the NHGRI Ethical, Legal and Social Implications Research Program.
… Structures and Values Genomics and the Physical and Social Environments Genomics and Social Justice Shifting Societal Definitions, Beliefs and … the Rights of Individuals and Groups Law, Regulation and Policy Governing Genomics Industry, Commerce and Economics … …
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 … for Genomics Research Resource . NIH Genomic Data Sharing Policy The NIH Genomic Data Sharing Policy sets guidelines …
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 … diverse research communities; and the ethical, legal, and social considerations should be integrated throughout the … Birney Roundtable discussion: The promise and perils of social and behavioral genomics Creating the fourth chapter of …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary … Carrie D. Wollinetz, Ph.D., Associate Director for Science Policy, National Institutes of Health … Related Content … … way we manage data related to the NIH Genomic Data Sharing Policy. … Eric Green, Genome Data Sharing Policy, privacy, …
Research Funding
Applications demonstrating excellent grantsmanship, grant mechanisms and research methodologies common to ethical, legal and social implications research.
… Lessons, the Domestic Legal Landscape, and Options for U.S Policy Anya Prince 2015 Summary Statement Full Application Ethical, Legal, and Social Implications of Translational Psychiatric Genomics … Trials of Germline Gene Editing: Ethical, Legal, and Social Issues Bryan Cwik 2018 Summary Statement Full …
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 … journals PubMed Central (Note: See the Public Access Policy regarding the NIH requirement to submit final, … of resources include the NIH Model Organism Sharing Policy and the NIH Research Tools Policy . … Resources should …