Do We Have The Right To Give Away Our Data, Or Not?

Abstract: Although data outside of health is regularly analogized to oil, and inside of health it holds enormous value, we as people rarely have access to our own data. Genomics is a remarkable case because we can go straight to companies to get ourselves sequenced. Yet it is remarkably hard to donate our genomes to research once we've been sequenced. This talk will explore the ironies and complexities of integrating consumer genomic data into the traditional research infrastructure.