The human genetics community needs protocols that enable secure sharing of genomic data from participants in genetic research. A paper published in the Journal of the American Medical Informatics Association compares three practical strategies to reduce the risk of re-identification - the process where anonymized personal genomic data can be matched with the true owner. The newest method uses advances in privacy technology based on cryptography, the mathematics of information.
Genomics and Society: Expanding the ELSI Universe, a three-day conference funded by NHGRI on the issues that spring from the ethical, legal and social implications of genomic research, will be held on June 5 - 7, 2017 by The Jackson Laboratory for Genomic Medicine and UConn Health. Presentations and workshops on topics ranging from the implications of genetic testing in the criminal justice system to the uses and potential misuses of CRISPR will be covered.
The Cancer Genome Atlas (TCGA) co-funded by the National Cancer Institute and NHGRI, has greatly improved our understanding of the molecular signatures underlying different cancers. Three recent publications from the TCGA network demonstrate how using TCGA's dataset can provide greater insight into preventing, diagnosing and treating specific cancer types. The papers focus on breast, bile duct and uterine cancers and characterize cancer research at a deeper molecular level.
Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis, or SJS/TEN, is the severest of adverse drug reactions that affects the skin. NHGRI's Division of Genomic Medicine supports research to develop approaches for the use of genome sequencing and other tools to improve diagnosis, treatment and prevention of diseases, such as SJS/TEN, that might have saved a young woman's life.
The National Institutes of Health plans to expand its Encyclopedia of DNA Elements (ENCODE) Project, a fundamental genomics resource used by many scientists to study human health and disease. Funded NHGRI, a part of the NIH, the ENCODE Project strives to catalog all genes and regulatory elements - the parts of the genome that control whether genes are active or not - in humans and select model organisms. Four years of additional support will build on a long-standing commitment to developing freely available genomics resources for use by the scientific community.