As clinical decision support and machine learning technology become more powerful, funding of medical research is shifting away from the traditional government and charitable foundations toward global corporations eager to develop secret intellectual property they can sell patient-by-patient. $Billions are being invested in secret databases like Roche Flatiron Health http://thehealthcareblog.com/blog/2018/03/01/the-time-is-now-to-develop-and-implement-a-national-health-data-strategy/#comment-862969 De-identification as a way to avoid consent is being sought by Facebook as well as the hidden data brokers https://www.cnbc.com/2018/04/05/facebook-building-8-explored-data-sharing-agreement-with-hospitals.html and natiion-states such as Italy with IBM Watson and England with Google Deep Mind (see attached paper) are getting in on the new funding bandwagon.
The attached NHS / DeepMind paper makes particularly clear how this conflict of interest operates. The researchers, clinical institution, and the corporate sponsors are fully aligned in wanting to keep these deals out of the public eye and to avoid questions of how future patients and society will pay for these "private islands of innovation".
Who is responsible for informing patients when their data is being used to create secret intellectual property?