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- Ethical, Legal and Social Implications (ELSI) Research Program4
- Genomics-Enabled Learning Health Systems (gLHS)1
- Genetic Architecture of Complex Traits1
- Genome Technology Program1
- Impact of Genomic Variation on Function (IGVF) Consortium1
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium2
- Developmental Genotype-Tissue Expression (dGTEx)1
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… As the field of genomics advances, genetic and genomic tests are becoming more common in, and out of, the clinic. Yet most genetic tests today are not regulated, meaning that they go … claims of the seller. … Several federal agencies regulate genetic tests: the Food and Drug Administration (FDA), the …
News Release
NIH will fund grants totaling $38 million over five years to develop methods that will improve the way that polygenic risk scores can be used to predict disease in diverse communities.
… Polygenic risk scores, often referred to as PRS, are a genetic estimate of a person’s risk for specific diseases. …
News Release
NHGRI plans to appoint Vence Bonham Jr., J.D., as acting deputy director, to elevate and accelerate efforts in diversity, inclusion and health equity.
… Appointment will elevate and accelerate NHGRI’s efforts in diversity, inclusion and health equity. … National Human … activities to advance the Institute’s work related to diversity, inclusion, health equity, anti-racism and social … made major contributions to the Institute’s research on diversity, inclusion and health equity. “Vence’s well-honed …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… For patients to have full access to the benefits of genetic testing, payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement. … Genomic medicine has the … of the human genome has created new opportunities for genetic tests to predict, prevent and treat disease. Tests …
Diversity in the Genomics Workforce
The Training, Diversity, and Health Equity (TiDHE) office along with other NHGRI colleagues have developed the Identifying and Evaluating Trainee Outcomes Toolkit to help programs from all over the country learn more about best practices for evaluating training programs related to genomic workforce diversity, research, and genomic workforce programs.
… The Training, Diversity, and Health Equity (TiDHE) Office, Ripple Effect … goals and contribute to enhancing genomics workforce diversity. The toolkit provides an overview of current … and Evaluating Trainee Outcomes Toolkit … The Training, Diversity, and Health Equity (TiDHE) office along with other …
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.
… Genetic Information Nondiscrimination Act (GINA) … The Genetic Information Nondiscrimination Act (GINA) is federal … to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and …
News Release
In a large-scale study of people from diverse ancestries, researchers narrowed down the number of genomic variants that are strongly associated with blood lipid levels and generated a polygenic risk score to predict elevated low-density lipoprotein cholesterol levels, a major risk factor for heart disease.
… the health of all people,” says Cashell Jaquish, Ph.D., a genetic epidemiologist and program officer within the … of Health. … Sarah E. Graham et al. The power of genetic diversity in genome-wide association studies of lipids . …
News Release
NHGRI has selected Robert Rivers, Ph.D., as the new director of the Office of Training, Diversity, and Health Equity (TiDHE). In this role, Dr. Rivers will provide strategic and programmatic leadership to extramural workforce development programs to prepare individuals for a genomics careers.
… Ph.D., as the new director of the institute’s Training, Diversity and Health Equity (TiDHE) Office. In this role, Dr. … well as his commitment to championing efforts to promote diversity, I’m excited to welcome him as the new TiDHE Office … to create a genomics workforce that reflects the full diversity and perspectives of the population so that genomic …
Diversity Center
Meharry Medical College establishes a Diversity Center for Genome Research (DCGR) that will narrow inequitable representation gaps for underrepresented, disadvantaged minority by realizing their vision to promote African ancestry genomic research through infrastructure building and the formation of basic, clinical, and computational science research teams that are inclusive, interdisciplinary, and community-engaged.
… disadvantaged minority (URM) groups by establishing a Diversity Center for Genome Research (DCGR). The Diversity … Genome Research at Meharry Medical College centers on the genetic basis of chronic diseases prevalent among African … that complete deficiency of the PLA2R1 gene is a genetic risk factor for sarcoidosis and tuberculosis and that …
For Patients and Families
The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.
… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD) was …