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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 …
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 …
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 …
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 …
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 following are research areas of interest that have been identified by the participating NIH institutes, centers, and offices (ICOs) on the investigator-initiated ELSI Research Grants (R01, R21, R03). Program Officer(s) contact information is also included for each ICO.
… participant preferences, informed consent, governance, privacy and security, and data sharing); this includes … health, and clinical data. Approaches to mitigate privacy and confidentiality issues related to the public … in research on potential stigmas, discriminations, and privacy concerns associated with either identification of …
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 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 …
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 …
Clinical Research
This study explores how microbes, such as bacteria and fungi, contribute to a very common skin condition called Atopic Dermatitis, known as eczema.
… in joining this study are very minor or very rare. Privacy issues: The study team will use codes for your …