Fantastic talk by John Wilbanks about the transformative potential of sharing health data into a sort of commons of data.
When you’re getting medical treatment, or taking part in medical testing, privacy is important; strict laws limit what researchers can see and know about you. But what if your medical data could be used — anonymously — by anyone seeking to test a hypothesis? John Wilbanks wonders if the desire to protect our privacy is slowing research, and if opening up medical data could lead to a wave of health care innovation.Imagine the discoveries that could result from a giant pool of freely available health and genomic data.
“Although a lot of people like privacy as their methodology of control around data, and obsess around privacy, at least some of us really like to share as a form of control, and what’s remarkable about digital commonses is you don’t need a big percentage if your sample size is big enough to generate something massive and beautiful. So not that many programmers write free software, but we have the Apache web server. Not that many people who read Wikipedia edit, but it works. So as long as some people like to share as their form of control, we can build a commons, as long as we can get the information out. And in biology, the numbers are even better.”