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News Release
NHGRI published its “Strategic vision for improving human health at The Forefront of Genomics” in the journal Nature. This vision describes the most compelling research priorities and opportunities in human genomics for the coming decade, signaling a new era in genomics for the Institute and the field.
… past. The vision points to critical areas of data control, privacy and consent that the genomics community must improve …
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 …
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 …
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 …
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 …
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 …
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 …
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 …