John Wilbanks: Let’s Pool Our Medical Data
In this TED Talk, data scientist John Wilbanks discusses how strict privacy laws inhibit scientific research efforts, and asks us to imagine what potential discoveries could result from a giant pool of freely available anonymized health and genomic data. Wilbanks says that if we’re willing to reach back and grab the dust off our “digital exhaust,” or the enormous volumes of data that are created from our digital footprints in health care and elsewhere, we can use it to build something together — a commons to serve the common good. It’s why he started Sage Bionetworks, which he believes is “the world’s first fully digital, fully self-contributed, unlimited in scope, global in participation, ethically approved clinical research study.” Through its own version of informed consent, Sage Bionetworks is using the design principles of the commons and translating it to health data that can create something great for the benefit of all.
John Wilbanks has worked to develop the ethical procedures needed to create an open, massive, mineable database of anonymized data about health and genomics from many sources. Wilbanks argues that the compilation of test results in one location would turn genetic info into big data, giving scientists new insights that could reveal patterns, expedite findings, and trump the current approach to healthcare research. An advocate for the universal adoption of data sharing in science, Wilbanks is a senior fellow with the Kauffman Foundation and a research fellow at Lybba.