This post made me think of George Churches new startup aimed at making research studies like this opt-in and pay money to participants, while making it easier for researchers to find large datasets for their research. While their bockchain-based platform seems overhyped, if anyone is in a position to accomplish this, it's George Church, so maybe they stand a chance at changing the way things are done in that industry.

https://www.nebulagenomics.io