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Staff
Dr. Heidi Sofia served as a program director in the Division of Genomic Medicine at the National Human Genome Research Institute from 2010-2023.
… biology and health such as secure data sharing with privacy, cloud computing at scale, semantic models for data … attacks: quantification and mitigation of privacy risks.  JAMIA,  24(4): 799-805. 2017 [ PubMed ] Tang …
News Release
As you celebrate Thanksgiving with your family this November, remember that this special day is also National Family Health History Day.
… with federal agencies and patient advocates to ensure privacy protections are in place. This Thanksgiving, start a …
The Genomics Landscape
In the May 2019 edition of The Genomics Landscape, NHGRI Director Eric Green recaps activities from National DNA Day 2019.
… locally in the D.C. area. A discussion titled “DNA, Privacy, and Social Justice: A Conversation about DNA Testing, Privacy Concerns, and Social Justice” was hosted by NHGRI and …
Research Funding
The three research domains to be considered for support by the NHGRI Ethical, Legal and Social Implications Research Program.
… genetic and genomic data use and issues surrounding data privacy, data protection, data breaches and actual or … genomic research. Efforts to address concerns related to privacy, discrimination, historical abuses and mistrust of … on traditional genomic research and vice versa. Data privacy and security issues in genomic citizen science and …
Policy Issues
Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.
… who receive genetic testing may be concerned about the privacy of their results and whether insurance companies …
Healthcare Provider Genomics Education Resource
An FAQ designed to help healthcare professionals understand the diverse landscape of direct-to-consumer (DTC) genetic testing and the benefits and limitations of these tests.
… professionals, which offers an additional level of privacy. In some cases, a consumer’s desire to be a part of … to solve crimes. 7  As a result, consumers may have privacy and safety concerns. Additionally, depending on the … Raw Data, Third-Party Interpretation Services and Data Privacy   What should I tell my patient about raw data from …
The Genomics Landscape
In the February 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the Genome Statute and Legislation Database, which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
… of genomics in healthcare and protections that preserve privacy and prevent discrimination. Many of these laws are … employment and insurance discrimination, genetic data privacy, genetics and genomics research, and the use of …
The Genomics Landscape
In the December 8, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., looks back on the success of the Genome: Unlocking Life's Code exhibition as it came to a close in November.
… data sharing, including consent, data ownership, privacy, and international regulations. By increasing …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… return of results, research involving children, and privacy and confidentiality. It also includes examples and …
Fact Sheet
A fact sheet detailing how the project began and how it shaped the future of research and technology.
… were intentionally made anonymous to protect their privacy.   However, the majority of the sequence came from …