A number of organizations across the world announced last week that they were working to form an alliance to develop standards so researchers would be able to share genomic and clinical data. "The idea is to focus not on the creation of individual data sets but to focus on the standards and shared principles and ethics that would make it possible for many people to build things that would be individually innovative and yet collectively could learn from each other," the Broad Institute's David Altshuler tells ScienceInsider in a Q&A.
Altshuler notes that it is "an ambitious proposal" and that working groups will be set up later this year to begin discussing technical standards, ethics, and more. He says they hope to come up with standards so researchers can share information, but also so that participants can determine how their data is used.
"We're going to try to come together and work together and develop a menu of options and technical standards to implement them so that people can make decisions," he says, adding that "[i]f it turns out there's a set of data that, because of permissions, can only be used for certain purposes, then that's exactly what should happen."