Search Results
Policies and Guidance
For FY21, NHGRI’s extramural program will be operating under the NHGRI 2020 Strategic Vision.
… Vision for Improving Human Health at the Forefront of Genomics" in Nature . The development of this vision involved participation by many scientists in … and expanding the diversity of the genomics workforce; and ethical, legal, and social issues related to genomic …
News Release
NHGRI-funded CSER investigators and colleagues point to need for greater evidence that DNA sequencing helps patients.
… program has made significant strides in defining the role of genomics in medicine. CSER investigators have discovered … DNA sequencing results; and provided new insights into the ethical, legal and social implications of using genomics in … outcomes. Others stressed the importance of improving standards for determining what variants do and their roles in …
News Release
TCF1 (for T cell factor-1) is essential for the creation and persistence of disease-fighting antibodies in the bloodstream.
… The gold standard for a successful vaccine is the creation of long-lasting antibodies that will defend the body against … new area for vaccine developers to explore in search of that gold. … Promising Area for Vaccine Developers The new … factor - a molecular switch that turns a gene or a cascade of genes on or off. In a series of experiments, the …
The Genomics Landscape
In the May 5, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., pays tribute to one of NHGRI’s founding staff members and current leaders, Bettie Graham, Ph.D., as she reached a truly remarkable milestone: 50 years of service in the federal government.
… Code exhibition at the Smithsonian’s National Museum of Natural History. As described in the December issue of The … information about the data), using commonly accepted data standards, submitting to a FAIR data repository, and working … panelists at this event will discuss the societal, ethical, and philosophical issues surrounding preimplantation …
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… Data sharing is an important aspect of the research endeavor that ensures maximal use of … … NHGRI strongly encourages the use of existing data standards and ontologies that are generally endorsed by the … do I need to share? … Does NHGRI endorse specific data standards and ontologies? … Where should I start? … Metadata …
About NHGRI
Answers to frequently asked questions on how the NHGRI receives and uses its funding.
… committees have the authority to approve specific sections of the federal budget. Representatives of NHGRI testify … community hospitals; and companies, apply for funding to conduct research in these areas. All applications undergo a … advisory groups include scientists; researchers in the ethical, legal, and social implications of the human genome …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… to participate in the studies. This raises the question of when and how it is appropriate for the scientists to look … Improvement Amendments of 1988 (CLIA) , which sets quality standards for all laboratories performing clinical testing. … released a report titled "Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… regulations may not require informed consent for all kinds of genomics research (e.g., if the samples or data are de-identified); however, there may be other policy or ethical reasons for conveying that such research might or … informed consent. According to the current definition of "human subject" in the Common Rule, informed consent is …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… Benowitz … A dozen awards from the National Institutes of Health will support research that incorporates DNA … information into electronic medical records. The goal of research conducted by the Electronic Medical Records and … treatment decisions, as well as its potential financial, ethical and social implications.  Northwestern University, …
News Release
NIH awarded grants to six medical centers to select from the most difficult-to-solve medical cases and develop effective approaches to diagnose them.
… Raymond MacDougall … The National Institutes of Health has awarded grants to six medical centers around … approaches to diagnose them. The clinical sites will conduct clinical evaluation and scientific investigation in … repositories. Network-wide data sharing will observe standards of patient privacy, confidentiality and management …