I gotta say, I wonder at what the balance of any discoveries will actually be. I am not a doctor, but I wonder if Machine Learning will identify anything other than geographic clusters of patients? I suppose that it is possible that this kind of info could help in diagnosis, but, machine learning seems unlikely to result in cures given the lack of any actual trials. Of course, improved incidence data might truly help earmark funds for research.

personally, I hope that my data could help people. I am not so concerned with my privacy that I would withhold my medical records if they could help. But, in exchange for that contribution I do want protection against misuse of that data by my insurers or other institutions. I recognize it isn't possible for me to enforce that use in any other way than withholding my data entirely.

The reality is that we cannot, as a society, afford to have no trust in our institutions. We need instead to focus on providing oversight and guidance of them such that they can actively contribute to the public good. Private contributions to institutions is mandatory for the public to succeed. maintaining that trust is the responsibilities of those institutions and they should seek whatever audits and oversights they can to keep that trust and fulfill their charters.