Search Results
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 …
News Release
The Social Genomics Project aims to understand what people around the world think about the intersections between genomics, genetics and society.
… public could voice their concerns about the study, and the privacy of survey takers was checked and double-checked. SBRB …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… Portability and Accountability Act (HIPAA), which lays out privacy requirements for health information. The modification …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… increased data sharing and concerns around genomic privacy, the genomics field recognizes the need for flexible …
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 …
News Release
Diverse populations are still underrepresented in public genomic databases, according to a new study by researchers from the NIH and Harvard Medical School.
… researchers while maintaining research participants' privacy. The researchers categorized studies by ancestral …
The Genomics Landscape
In the July 7, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., emphasizes the importance of the Technology Transfer Office and its mission to manage all the legal negotiations that help to protect federally funded research from being unduly exploited, while also giving that research avenues to reach patients through the commercialization of promising advances.
… type 2 diabetes, epigenomics, aging, cancer, data privacy, and others.  The ClinSeq Project is a genomic …
Clinical Research
A Longitudinal Natural History Study of Children with Mitochondrial Disease (at the NIH Clinical Center).
… remotely for records and samples collection.   We take privacy and confidentiality very seriously. Your (your …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… be used to help identify them.  There also may be other privacy risks that we have not foreseen.  Although we will … The privacy protections, and limitations of those protections, … to summary results.  Example 1  To help us protect your privacy, we have obtained a legal document called a …
The Genomics Landscape
In the November 2018 edition of The Genomics Landscape, NHGRI Director Eric Green highlights the 25th anniversary of NHGRI's Intramural Research Program.
… to GSR information in a way that is proportional to the privacy risk posed by sharing this information (relative to … recognizes that some study populations may have different privacy risks (e.g., those from isolated geographic regions …