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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… uses, it is important to ensure that the individual's privacy is respected. laws and policies protect the privacy of an individual's genomic information, and there is … and the need to protect research participants' privacy . achieving the right balance is particularly …
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 …
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
General Medicine IRB Panel #1 is responsible for protecting human subjects of research protocols conducted NHGRI, NHLBI and other NIH institute investigators.
… investigators. … human subjects research, research privacy , privacy of research participants, clinical trials, genetic …
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 …
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 …
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 …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… the clinic, genetics, genetic testing, newborn screening, privacy in genomics, genomic technology … genomic medicine …