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Clinical Research
A study for patients with unexpected genetic results
… who received unexpected genetic test results about their risk for cancer, heart disease, and other conditions after … or prevented. Many of these results are related to cancer risk and heart conditions . If you think you have received a …   Received a genetic testing result related to cancer risk or heart disease  even though they were not having …
News Release
Researchers with support from NIH will conduct research into the genetic underpinnings of Alzheimer's disease.
… letters in a cell's DNA-may contribute to increased risk or protect against the disease. The NIH awarded grants … genomic regions that are likely to contain rare high-risk or protective Alzheimer's variants in individual … protect against Alzheimer's in people who are at greater risk for developing the disorder because they carry the APOE4 …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… they are being recruited because they have a disease risk, which could come as a surprise to them. Writing consent … results about an individual's current or future health risk may be relevant to family members. For example, learning … arise include whether it is appropriate to disclose the risk of adult-onset conditions to children; whether to honor …
The Genomics Landscape
In the May 2021 issue of the Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D. notes that a number of individuals with strong ties to NHGRI have been nominated and/or appointed to serve on the White House Science Team.
… Ph.D., M.P.H., and Erin Ramos, Ph.D., M.P.H., to discuss polygenic risk scores and their potential impacts and benefits on …
Policies and Guidance
For most of FY20, NHGRI’s extramural program will be operating under the 2011 National Human Genome Research Institute (NHGRI) strategic plan.
… project, how fast the field is changing, and the level of risk.   NHGRI will encourage early stage investigators to … who submit their first renewal applications may be at-risk for a gap in funding, so special consideration will be … applications that are innovative, but whose overall Impact Scores would otherwise preclude them as candidates for …
Health
Guidance on collecting your family health history information before visiting the doctor.
… your doctor predict the disorders to which you may be at risk, and help you take action to keep you and your family … … Related Content … Families Sharing Health Assessment and Risk Evaluation (SHARE) helps you and your family learn how your family health history affects your risk for diseases. … FamiliesSHARE … Family Health History …
Event
On November 16-17, 2023, the National Human Genome Institute will co-sponsor a workshop, Advances in the Genetic Architecture of Complex Human Traits, to take a historically grounded and forward-looking approach towards dissecting the genetic architecture of complex traits in humans.
… 9:35 a.m.   Portability, Ancestry, and Context for Polygenic Scoring in Humans Bogdan Pasaniuc, UCLA 9:55 a.m.  …
Professional Development Programs
The JHU/NIH Genetic Counseling Training Program addresses the growing need for genetic counseling services.
… for members of families affected by a genetic condition or risk. Decisions about whether to use genetic tests require … help family members to adapt to the condition or risk, often under conditions of uncertainty. As the scope of … English is not the primary, official language to submit scores on an English Language Proficiency Test .  The NIH/JHU …
Genetic Disorders
Velocardiofacial syndrome is the most common syndrome associated with a cleft palate.
… learning disability. When tested, their verbal IQ scores are greater than 10 points higher than their performance IQ scores. This combination of test scores brings down the full … as autism. As adults, these individuals have an increased risk for developing mental illness such as depression, …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.