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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… the need to protect research participants’ privacy.  Federal laws like the Common Rule  and the Health Insurance … of the research participants (see Genomic Data Sharing Policy  below). In addition, NIH issues Certificates of … contexts. The Combined DNA Index System (CODIS) is the Federal Bureau of Investigation (FBI) program of support and …
The Genomics Landscape
In the February 2, 2023 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the new NIH Data Management and Sharing (DMS) Policy and how it emphasizes the importance of good data management practices.
… date for the new NIH Data Management and Sharing (DMS) Policy occurred last month – January 25, 2023. The DMS Policy emphasizes the importance of good data management … data to explore new frontiers of discovery. Though the policy was published two years ago, many may still be unsure …
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.
… summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the GDS policy's data management practices would help support NIH's … NIH chief of staff and associate director for science policy, and NHGRI director, Dr. Eric Green. Additionally, …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary … Carrie D. Wollinetz, Ph.D., Associate Director for Science Policy, National Institutes of Health … way we manage data related to the NIH Genomic Data Sharing Policy. ​ …
Staff
Rebecca Hong is a scientific program analyst in the Policy and Program Analysis Branch at the National Human Genome Research Institute.
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… Rebecca Hong is a scientific program analyst for the Policy and Program Analysis Branch (PPAB) at the National … Institute (NHGRI). Her responsibilities in PPAB include policy analysis, policy development, coding and reporting, workshop … Rebecca Hong, genomic policy, FDA regulation, genomic technology, legislation, AIDS …
Staff
Leonard Ross is the director of the Ethics Branch at the National Human Genome Research Institute.
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… ethical conduct, human resources, conflicts of interest, federal policy …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… Cristina Kapustij, M.S., is chief of the Policy and Program Analysis Branch at the National Human … Kapustij spearheads the branch’s efforts to understand the policy implications of genomics research and technologies, … policy responses to potential changes in state and federal legislation; coordinated interactions with the Food …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office … (NHGRI). She spearheads NHGRI’s scientific data sharing policy development, oversight, and implementation. Ms. … NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has advised the …
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.
… Several federal agencies regulate genetic tests: the Food and Drug … Centers for Medicare and Medicaid Services (CMS), and the Federal Trade Commission (FTC). Genetic and Genomic tests, … validity of clinical genetic tests, but there is no federal oversight of the clinical validity of most genetic …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… research? Research participants are protected by a set of federal regulations, known as the Common Rule, which ensures … such as in the case of a subpoena. There is also a Federal law called the Health Insurance Portability and … the privacy of your genetic information, there is a Federal law called the Genetic Information Nondiscrimination …