Paper short abstract:

MIDATA.coops are an institutional innovation aiming to enable citizens to gain control over their data, especially health data. This paper analyses the mission and role of MIDATA.coops within the data ecosystem, highlighting the ethics and government questions that are currently under discussion.

Paper long abstract:

MIDATA.coops aim to enable citizens to control their data especially health data. The paper seeks to clarify the mission of MIDATA.coops and their role within the data ecosystem. In particular the following issues will be discussed:

1. Why should citizens organize themselves as a cooperative in order to gain control of their data?

2. What functions should a cooperative have and what functions can be left to the private sector?

3. What, if any, should be the role of the for profit sector as a partner?

4. By virtue of what kind of ethical framework, can data cooperative ensure ethical conduct in data transactions by all of their members?

5. How can health data cooperatives survive in a digital economy environment dominated by large businesses, without being absorbed and transformed in their goals?