I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen.
These laws, while well-intentioned, kill people.
If you think that's an OK tradeoff, I guess you're free to accept that. But there is very real blood on your hands, the fact that none but the most egregiously common diseases are studied. It doesn't have to be this way.
These laws, while well-intentioned, kill people.
If you think that's an OK tradeoff, I guess you're free to accept that. But there is very real blood on your hands, the fact that none but the most egregiously common diseases are studied. It doesn't have to be this way.