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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.
… Asked Questions 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? … Skip to a …
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 …
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
… and reviewing our privacy policy. The U.S. Department of Health and Human Services, of which NHGRI is a part, does … policies with respect to privacy and data safeguarding standards. Information Systems (IT) systems owned and … policies with respect to privacy and data safeguarding standards. Information Technology (IT) systems owned and …
The Genomics Landscape
In the October 6, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., celebrates the 25th anniversary of the NIH Intramural Sequencing Center (NISC). a well-respected and highly used large-scale DNA sequencing center that exemplifies the evolution of the field of genomics and the ever-increasing abilities to produce prodigious amounts of genomic data.
… operating based on last year’s budget — awaiting passage of a new budget for the current fiscal year. The CR allows … of genomic information in existing clinical data standards and models” as a short-term need for the clinical … around biomedical grand challenge questions, to emphasize ethical AI best practices for biomedicine, and to promote …
About NHGRI
NHGRI research undergoes peer review by advisory committees who review extramural grant applications and intramural research programs.
… members represent leading investigators in all areas of genetics, biology, biochemistry, information science and … economics are also represented and serve to inform issues of the ethical, legal and social implications of human genome …