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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 …
Educational Resources
Gene regulation is the process of turning genes on and off.
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.
… Protecting your privacy is very important to us. The National Human Genome … Assessments posted for public view on the  Department of Health and Human Services website . Groups of records that … (PIAs) posted for public view on the Department of Health and Human Services (DHHS) Web site . NIH conducts and …
Archive
… Congressional Task Force on Health Records and - Genetic Privacy Preventing Genetic Discrimination - in Health Insurance … Archive …
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 …
Staff
Cristina Kapustij is the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute. ​
… she was the program manager for a National Institutes of Health cooperative research grant titled, "Sequencing of … Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … Cristina …
Staff
Elena Ghanaim is a policy analyst in the Policy Analyst for the Policy and Program Analysis Branch at the National Human Genome Research Institute. ​
… NIH and grantee partners on data sharing and privacy policy issues. Elena also advises the NHGRI Genomic … other communications materials on human subjects research regulations. Ms. Ghanaim graduated from Rutgers University in … fellow for two years at the National Institute for Child Health and Development (NICHD). She went on to receive her …