Search Results
News Release
Fearful patients who received information about the role of genomics in obesity were less likely to take steps to improve health habits
… visit to the doctor, the results can be unexpected. … New research suggests that fearful patients who received information about the role of genomics in being overweight viewed the information as … she asked the 1,126 overweight participants to write for five minutes about situations that made them very angry …
About NHGRI
Information about how the NHGRI receives its funding and decides how to spend its annual budget.
… The National Human Genome Research Institute (NHGRI) receives its funding through … of genetic information. The NHGRI budget provides funding for a dynamic intramural research program in genetic and … to spend its annual budget. ​ … NHGRI Budget, NIH Budget, Genomics Research Funding, Congressional Justification … …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… data to use data generated from sources with participant consent for unrestricted access or for General Research Uses through … Data, Data Sharing, Data Repositories, Scientific Data, Informed Consent, Sharing Genomic Information, Protecting …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic … data from human and non-human sources. As a leader in genomics, including relevant policy development and … expectations. … In early 2020, NHGRI will require explicit consent for future research use and broad data sharing of all …
Educational Resources
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment.
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases.
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… among the millions of online sources is a difficult task for almost everyone. We hope these tips will help you perform … information is available online. The material provided is for informational or educational purposes only and is not … specific tests and products by the National Human Genome Research Institute or the Office of Rare Diseases at the …
Administrative
The Information Technology Branch provides leadership and service for information technology resources at NHGRI.
… Technology Branch (ITB) provides leadership and service for all information technology (IT) resources for the National Human Genome Research Institute (NHGRI). … Applications ITB develops and …
15 Ways Genomics Influences Our World
Advances in genomics are helping you access information about your genome from your home.
… Advances in genomics are helping you access information about your genome … tests. In contrast to clinical genomic testing, such as for cancer [see Cancer Genomics ] and prenatal screening … ethical questions. Since children may not be able to consent to such a test and/or they might be unable to fully …
Funded Research
The Advancing Genomic Medicine Research (AGMR) program stimulates innovation and advance understanding of when, where and how best to implement the use of genomic information and technologies in clinical care.
… (ARDI): Advancing Genomic Medicine through rare diseases research in Africa Sean David University of Chicago … Iftikhar Kullo Mayo Clinic Rochester Genomic Medicine for Individuals from East Africa (GEMINEA) Pankaj B. Agrawal … Infants and Children: A Novel Paradigm in Public Health Genomics Julio David Duarte University of Florida Preemptive …
News Release
The Clinical Sequencing Exploratory Research Consortium has offered an ethical framework to guide pediatricians in pursuing clinical sequencing studies.
… genome sequencing uncovers signs of possible genetic risk for disease in patients who are too young to give informed consent. … In a new analysis, a working group of the Clinical …