EXCERPT

Early data-sharing efforts have led to improved variant interpretation and development of treatments for rare diseases and some cancer types. However, such benefits will only be available to the general population if researchers and clinicians can access and make comparisons across data from millions of individuals.

Despite much progress, genomic and clinical data are still generally collected and studied in silos: by disease, by institution, and by country. Regulatory data-privacy requirements do not seamlessly lend themselves to the secure sharing of data within and across institutions and countries. Current practices in research and medicine hinder the sharing of data in ways that tangibly recognize an individual's contributions. Tools and analytical methods are nonstandardized and incompatible, and the data are often stored in incompatible file formats. If we stay this course, the likely outcome will be an assortment of balkanized systems akin to those developed for U.S. electronic health records, which, although designed to advance human health by sharing clinical data across institutions, have by all measures fallen short of that goal because of a lack of interoperability.