The Ethics of Medical Data Donation
Given that personal data can be copied, individuals are entitled to copies of their data and individuals are the ultimate aggregators of all their personal data, citizens are elevated to new roles at the center of health research and a novel personal data economy. There, citizens, not some multinational company, control the use of and benefit from the intellectual and economic value of these data.In a chapter of the book you'll find a description of MIDATA cooperative, a swiss case. My impression is that this is the appropriate approach. A closer initiative is SalusCoop. However, as happens in any public good, its governance is always the foremost issue.
