Ulrich K. Genick is a co-founder of the Swiss MIDATA health-data cooperative. Ulrich works as a life-science researcher and teaching specialist at the Institute for Molecular Systems Biology and the Center for Active Learning of the ETH Zürich, Switzerland. In one of his research projects he works with citizen scientists and their personal genome data to understand the genetic basis of inter-individual variations in taste and smell perception.
MIDATA, a Swiss Health-Data Cooperative
MIDATA is a citizen-controlled, not-for- profit data cooperative that facilitates the collection, aggregation, and sharing of personal data for medical research and personal health. To this end, MIDATA has developed a secure, web-based data platform that stores personal data in encrypted form and only the individual data owner holds the encryption key. This gives the individual members full control over who has access to exactly what data and for what purpose. The first pilot trial using the MIDATA platform was launched in spring 2016. The central idea behind MIDATA is that the individual citizen is in the best legal and ethical position to aggregate and control data about him or herself. Putting individual citizens in control of their data provides the possibility to unlock the value of personal health data for the individual and for society at large. In the context of biomedical research, putting citizens in control of their own data also transforms their role from a passive “consent-giving” research subject to an active and engaged research partner.