Data Hoarding Can Kill: Building a Global Commons for Interpreting Genomic Variants
Robert Cook Deegan is a professor at the School for the Future of Innovation in Society, and Consortium for Science, Policy & Outcomes at Arizona State University and author The Gene Wars: Science, Politics, and the Human Genome and over 250 other publications.
Interpreting the clinical significance of genomic variants in more than 20,000 human genes will require a global effort lasting decades. Yet incentives to share data are weak and some business models rely on data-hoarding for proprietary advantage. How in the world can we build a system that enables interpretation of genomic variants? Starting from clear and immediate problems where system failure harms patients, we will review the landscape of and prospects for building a robust medical information commons.