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- Ethical, Legal and Social Implications (ELSI) Research Program2
- Genomics-Enabled Learning Health Systems (gLHS)2
- Genome Technology Program2
- Impact of Genomic Variation on Function (IGVF) Consortium3
- NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL)2
- Genomics Research to Elucidate the Genetics of Rare Diseases (GREGOR) Consortium1
- Developmental Genotype-Tissue Expression (dGTEx)1
- Multi-Omics for Health and Disease (Multi-Omics)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.
… and their providers. Will use of the test lead to improved health outcomes CMS implements regulations to control the analytical validity of clinical … that a business made false or misleading claims about its privacy or data security procedures or failed to employ …
Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… An individual’s privacy should be respected when their genomic information is … privacy.  Federal laws like the Common Rule  and the Health Insurance Portability and Accountability Act  (HIPAA) … testing. Currently, many U.S. states have laws or regulations that govern genomic privacy and illegitimate uses …
Policies and Guidance
NHGRI does not collect personally identifiable information about you on genome.gov unless you volunteer to provide it.
… Thank you for visiting genome.gov and reviewing our privacy policy. The U.S. Department of Health and Human Services, of which NHGRI is a part, does not … Assessments posted for public view on the Department of Health and Human Services website . Groups of records that …
Research Funding
The Genomics of Gene Regulation project develops methods to construct predictive, accurate gene regulatory network models using genomic data​​.
News Release
Three practical strategies for reducing the risk of re-identification, the process by which anonymized personal genomic data are matched with the owner.
… to researchers has been a challenge. Recent advances in privacy technology have begun to make a difference in this … Project, initiated by the Global Alliance for Genomics & Health (GA4GH) and funded in part by the National Human … The Beacon Project, Global Alliance for Genomics & Health, GA4GH, nucleotides and chromosomes … Three practical …
News Release
NIH has awarded grants of more than $28 million aimed at deciphering the language of how and when genes are turned on and off.
… Steven Benowitz … The National Institutes of Health has awarded grants of more than $28 million aimed at … for defining the role of genomic differences in human health and disease." With these new grants, researchers will … 27 institutes and centers at the National Institutes of Health. The NHGRI Extramural Research Program supports grants …
Health
The Family Health History Group connects stakeholders, researchers, and thought leaders to share learning, understand barriers in depth, and discuss issues and potential solutions related to the collection of family health history information.
… The Family Health History Group connects stakeholders, researchers and … potential solutions related to the collection of family health history information. Multi-disciplinary, volunteer members come from government, industry, health care, research, advocacy and policy backgrounds, and …
Health
Knowledge of your family health history can help you and your healthcare providers identify patterns of inheritance and risk factors.
… Knowledge of your family health history can help you and your healthcare providers … of inheritance and risk factors. … Modernizing family health history: achievable strategies to reduce … 24. … Researchers build a statistical model using family health history to improve disease risk assessment May 1, 2019 …
Health
Guidance on collecting your family health history information before visiting the doctor.
… Find out how learning your family's health history can help you discover your genomic heritage … General's Family History Initiative, the My Family Health Portrait  is a website that helps you create your own family health history. Using any computer, an Internet connection …