Search Results
Facet (Page)
Refine Your Search
Audiences
Content Formats
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 …
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 … or court order. The NHGRI is committed to protecting your privacy. We will not collect any personal information about … the information you provide to us in accordance with the Privacy Act of 1974, as amended (5 U.S.C. Section 552a). Site …
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 …
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 …
Clinical Research
The Protocol Service Center provides assistance in the development and administration of study protocols requiring NIH Institutional Review Board approval.
… Board approval.​ ​ … Human Subjects Research, Research Privacy, Privacy Of Research Participants, Clinical Trials, Genetic …
Clinical Research
The Institutional Review Board (IRB)Â is responsible for protecting the rights and welfare of the human subjects of research protocols that are conducted by intramural investigators in NHGRI and a number of other institutes.
… of other institutes. … Human Subjects Research, Research Privacy, Privacy Of Research Participants, Clinical Trials, Genetic …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… research and clinical care, with low risk to participants' privacy. However, because there could be a small risk of … be available for studies where there might be additional privacy concerns, such as those that include populations from … Policy. ​ … Eric Green, Genome Data Sharing Policy, privacy, genomic variants … Today, we are updating the way we …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… scientific advances and protect research participants' privacy interests by allowing genomic summary results from … ​ … Genomic data sharing policy, data management update, privacy and research participants, science policy … NIH …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… such as the measures in place to protect participants' privacy, and under what circumstances information might be … health risks and the protection of research participant privacy. The IRB Guidebook  from the NIH Office of … disease groups, face some unique concerns with regard to privacy, stigmatization, and discrimination. For example, for …