Big Data and Health – Data Sovereignty as the Shaping of Informational Freedom

English translation to be published.

Big data is one of the key concepts of current societal debate. In contrast to conventional data processing, it is characterized by the large volume and variety of data, and the high velocity with which it is collected and processed. These developments are also affecting the healthcare system and result in new chances for better diagnosis, therapy, and prevention but also new risks such as loss of control over personal data due to intransparent data flows.

The German Ethics Council examined these trends in a two-and-a-half year long process that involved extensive exchanges with experts and interested members of the public. The Opinion analyses the chances and risks of big data in five health relevant application contexts, evaluates the current legal framework and explores how values such as freedom, privacy, sovereignty, beneficence, justice, solidarity and responsibility can be guaranteed under big data conditions.

The German Ethics Council recommends a governance concept that focuses on data sovereignty as its central guiding principle and makes specific suggestions to (i) realise the potentials of big data, (ii) preserve individual freedom and privacy, (iii) safeguard fairness and solidarity, and (iv) promote responsibility and trust.