Citizen Science by Controlling the Use of One's Personal Data
Once upon a time at the beginning of the internet age before the existence of MIDATA cooperatives people signed up for free digital services and every day they happily shared photos, text messages and other personal data online. Multinational companies that offered these free services hungrily gathered and analyzed these data and sold them for large profits to retailers to enable personalized advertisement. Insurance companies raised premiums of people buying XXL clothes and retailers sent coupons for baby clothes to teenage girls because they inferred from the girls' shopping data that they were pregnant before they or their parents knew. At the same time doctors and hospitals stored personal health data of people in inaccessible silos so that patients had no access to their data and drug side effects where not reported in time. Until one day, citizens realized that although they were living in free democratic societies they were in fact caught in the barbed wire of a digital dependency from multinational data companies, doctors and hospitals. They got together and started national MIDATA cooperatives in which they, as legal owners of their data, requested copies of their personal data from doctors, hospitals and data companies. This started a political movement towards digital self-determination and freedom from digital feudalism. As cooperative members they were able to manage and share their personal data according to their wishes and needs in much the same way they were used to controlling their financial data. These data cooperatives possess a linked IT infrastructure such that patients with a rare disease rapidly find each other and can make their health and medical data accessible for global research. Because of that, MIDATA cooperatives grew rapidly in membership and were able to take a significant share of the rapidly growing personal data market. Until finally, citizens were again in control of their digital identity. They could participate in the knowledge gain obtained from aggregated health data for personalized health and prevention and profit from the huge economic value of these aggregated data. In this way the political democracies were enforced by cooperative-mediated economic democracies and John Rawls' vision of the Property Owning Democracy as the most just form of government became a reality.
Prof. Dr. Ernst Hafen
Institute for Molecular Systems Biology