Search Results
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… NHGRI's Table of State Statutes Related to Genomics  provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. … is reviewed and updated monthly. Searchable topics in the database include employment and insurance …
Policy Issues
Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.
… center around human germline because editing changes made in the germline would be passed down to future generations. … to make such editing more accurate and even "easy" in comparison to older technologies. Bioethicists and … banned research on germline editing, including 15 nations in Western Europe, because of ethical and safety concerns. 3 …
Policy Issues
Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.
… funded by NHGRI or other NIH Institutes takes place in the petri dish and in nonhuman organisms such as mice or zebrafish. Researchers …  (traits). A typical study might be to model human disease in mice by deleting or editing certain genes that are thought … many cell types but by definition they also change genes in reproductive cells (like sperm and eggs). These changes …
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.
… and may be shared broadly and used for future research in a manner consistent with the participant’s informed … will be stored for an unlimited period of time to be used in future research. The research may be about similar … possible.  - Credit: NHGRI Special Considerations for Genomics Research and NIH Sample Language for Data and …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… Participating in genomics research is an opportunity to support scientific exploration of the genome and to help NIH in its mission to understand, prevent, detect and better … to your family members about your choice to participate in research. Also ask the researcher what information might …
The Genomics Landscape
In the February 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the Genome Statute and Legislation Database, which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
… As February begins, many of us at NHGRI are working hard in preparation for the upcoming 101st meeting of the … the career of Bettie Graham, Ph.D., who we wish the best in retirement. To learn more about her remarkable career and … about the individuals who provided those samples. In this article, University of Colorado researchers describe …
Policy Issues
Patients with genetic disorders and members of the public have diverse about germline genome editing.
… with genetic disorders and members of the public, both in the United States and around the world, have diverse views … currently have treatment options. Others, such as those in the deaf community, do not consider their condition to be … genetic conditions would be less likely to be accepted in society. Many communities generally question the idea that …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … Genome Research Institute (NHGRI). Her responsibilities in PPAB include policy analysis, policy development, coding and reporting, … Rebecca Hong, genomic policy, FDA regulation, genomic technology, legislation, AIDS …
About NHGRI
The Genomic Medicine Working Group explores and advises on issues related to the adoption of genomic medicine.
… for Human Genome Research that explores and advises on issues related to the adoption of genomic medicine. … outlined by the 2011 NHGRI Strategic Plan  and continued in the 2020 NHGRI Strategic Plan . The working group will … of genomic medicine programs. The meetings focus on issues surrounding the adoption of genomic medicine and help …
The Genomics Landscape
In the June 2018 issue of The Genomics Landscape, NHGRI Director Eric Green highlights the success of The Cancer Genome Atlas.
… are available on the ' Establishing a 2020 Vision for Genomics ' website. NHGRI will host a Town Hall at the University of Washington in Seattle, WA on June 19, 2018, and at Stanford University in Stanford, CA on July 17, 2018. … and accomplishments from the institute and the field of genomics.  …