You--as an individual--receive zero benefits from your medical data when it's kept private. You can't consume it, you can't use it, and you can't trade it. It h

You--as an individual--receive zero benefits from your medical data when it's kept private. You can't consume it, you can't use it, and you can't trade it. It has no inherent value on its own. Were researchers forced to pay you for access to your de-identified data, it'd be a number so infinitesimal as to be all but meaningless. You aren't giving up something of value to you. There's zero opportunity cost involved. The value is added after your data is collected, collated, analyzed, and used by researchers. Individually, it's meaningless. Together, it's priceless. Will someone eventually profit? Sure, but they'll do so because society benefits from the work they've done. And eventually, the cost will decrease. Would you rather have drug treatments that exist in the first place even if someone profits from them or nothing? Those are pretty much your options. For all of its flaws, the current research model at least works. The only other option, besides doing nothing and letting people die from diseases we could eventually treat, is some sort of public financing and that comes with a host of problems. Would anyone really be so foolish as to want to subject medical research to the congressional budget process, even if there's an abstraction layer between congress and the researchers? That means tradeoffs, and lots of them: for instance, Drug option A would be pursued, and option B ignored because we're already funding A even if B might be more promising later on. We already see it with federal applied research when critical work is jeopardized for the sake of political grandstanding. Every so often, someone will trot out a cherry-picked grant they don't like and wave it around like a red flag in front of a bull. Drug companies might be bad enough, but the politicians would be worse.