Personal Data Cooperatives – A New Data Governance Framework for Data Donations and Precision Health

Summary

Personalized health research depends on aggregated sets of personal data from millions of people. 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. Here, I show that democratically controlled nonprofit personal data cooperatives provide a governance and trust framework for data sharing and data donation. They also provide a means of attaining improved precision health and a digital society in which socio-economic asymmetries can be balanced.