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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 … the information you provide to us in accordance with the Privacy Act of 1974, as amended (5 U.S.C. Section 552a). Site … used to help identify an individual. Data Safeguarding and Privacy All uses of Web measurement and customization …
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 … or other uses. This page summarizes genetic and genomic privacy in these domains, along with information on the specific laws and policies that protect the privacy of genetic and genomic information. In the United …
Archive
… Researchers explore genomic data privacy and risk … Archive …
Archive
… Workshop on Privacy, Confidentiality and Identifiability- in Genomic …
Archive
… Workshop on Privacy, Confidentiality and Identifiability in Genomic …
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 researchers at Stanford University showed that privacy can be compromised by repeated queries for variants … to reduce the risks of re-identification using advances in privacy technology that are based on cryptography, the …
Archive
… NHGRI Workshop on Privacy, Confidentiality and Identifiability in Genomic …
Archive
… Congressional Task Force on Health Records and - Genetic Privacy Preventing Genetic Discrimination - in Health …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… and procedures that improve health while protecting the privacy of research participants. The final policy was posted … access to human data is based on data sensitivity and privacy concerns developed under the GWAS policy will … of data into knowledge, improve health and protect patient privacy. ​ … Genomic data sharing policy, GDS, data to …
News Release
NIH submits new policy that requires all NIH-funded investigators who conduct sensitive, health-related research be issued Certificates of Confidentiality.
… Cures Act, enacted December 13, 2016, was to strengthen privacy protections law for research participants. The new … federally-funded research. … To implement one of the law's privacy provisions, the National Institutes of Health (NIH) … for Issuing Certificates of Confidentiality … A Focus on Privacy … Related Content … New policy to protect research …