Search Results
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.
… encourages the broadest appropriate future use and sharing of genomic and phenotypic data. Example 1: Consent for General Research Uses (GRU) Portions of your samples, genomic data, and health information will be stored for an unlimited period of time to be used in future research. The research may be …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the … When conducting genomics research, two essential values of scientific research should be balanced: the need to share … of the research participants (see Genomic Data Sharing Policy below). In addition, NIH issues Certificates of …
About Genomics
In 2003, an accurate and complete human genome sequence was finished two years ahead of schedule and at a cost less than the original estimated budget.
… available to scientists and researchers two years ahead of the original Human Genome Project schedule and at a cost … in the human genome is considered by many to be one of the most ambitious scientific undertakings of all time, even compared to splitting the atom or going to …
The Genomics Landscape
In the December 2, 2021 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., spotlights the re-opening of the Genome: Unlocking Life’s Code exhibition at the Smithsonian’s National Museum of Natural History (NMNH) in Washington, D.C.
… a two-day virtual NHGRI symposium entitled “The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism” will begin. As I mentioned in the November issue of The Genomics Landscape, this symposium will examine the … therapies involving genomic modifications for dozens of genetic diseases. Speakers: Timothy Yu, M.D., Ph.D., …
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… and staff in the development and administration of study protocols that require NIH Institutional Review … NHGRI PSC is staffed by protocol navigators with knowledge of the protocol review cycle and expertise in Institute and … the NIHIRB, the NHGRI Bioethics Core, and the NIH Office of Human Subjects Research Protections (OHSRP) to create a …
Clinical Research
The Institutional Review Board (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… (IRB) is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes. … Review Board Office (IRBO) located within the Office of Human Subjects Research Protections (OHSRP). The OHSRP …
Talking Glossary
Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs.
… racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … racism. Scientific racism is a historical pattern of ideologies that generate pseudo-scientific racist beliefs. … in the 19th and early 20th centuries were proponents of such ideologies. By the mid-20th century, …
Clinical Research
A study for patients with unexpected genetic results
… is recruiting people who received unexpected genetic test results about their risk for cancer, heart disease, and other … The Genomic Services Research Program (GSRP) is a study of people with "secondary results” from genetic testing. Secondary results are …
Policies and Guidance
NHGRI links to external websites to supplement the information found on our website.
… on our website. However, we cannot guarantee the accuracy of information provided on external websites. … organizations. You are subject to external site's privacy policy when you leave our site. We proudly comply with 508 … Research Institute (NHGRI) or the National Institutes of Health (NIH). NHGRI is not responsible for the contents of …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … development, and project management. The focus areas of her work are FDA regulation of genomic technologies and U.S. science policy legislation. … Rebecca Hong, genomic policy, FDA regulation, genomic technology, legislation, AIDS …