This course developed by William Allen and Marta Wayne covers topics pertaining to ethics, science policy, and translation in genetics research, as well as responsible conduct of research.
Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds.
H3ABioNet, a Pan African Bioinformatics Network for the Human Heredity and Health in Africa (H3Africa) consortium, was established to develop bioinformatics capacity in Africa and enable genomics data analysis by H3Africa researchers across the continent. H3ABioNet provides guidelines and resources on the use of clinical data, data management, and data standardization.
This bill specifies that money from the genetic disease testing fund may be used for costs related to data management, and newborn blood collection, storage, retrieval, processing, inventory, and shipping.
Funds are requested to license and adapt the Baylor Research and Assurances Information Network (BRAIN) for use at the University of Maryland Baltimore. BRAIN is an online system for creating, routing, approving, and archiving IRB documents that has been in use at Baylor since August 2001. BRAIN will greatly enhance our capacity to evaluate new IRB protocols, to oversee active protocols, and to document responsibilities and accountability of all individuals conducting research involving human subjects under the auspices of the University of Maryland Baltimore.
When the Human Genome Project was completed almost ten years ago it cost millions of dollars to sequence an individual's genome. Yet, the evolution of high-throughput sequencing and computational tools has been swift and it will soon be possible to genotype anyone for a nominal price. The ability to generate genomic data coincides with the adoption of electronic health records, setting the stage for large-scale personalized medicine research, the results of which can improve the efficiency, effectiveness, and safety of healthcare delivery.