Data Altruism Consent: A Move Forward Towards the Creation of a European Health Data Space?
摘要
The social potential associated with using and reusing personal data is immense. Although the General Data Protection Regulation seeks to allow personal data, such as healthcare data, to be re-used for the public interest, the full potential of this regulation has not yet been realized. In fact, maximizing the common good that can be extracted from such information required new and additional legal frameworks. The Data Governance Act was the first piece of EU legislation established to support data sharing across sectors. An important cornerstone of this regulation is that it supports data sharing for altruistic purposes through a “data altruism consent form”. This instrument aims to foster data sharing by improving trust in individuals and businesses to voluntarily share their data. The Data Governance Act, and in particular this data altruism consent, is also playing a pivotal role in creating a European health data space—a space that should serve as a rich data resource for improving healthcare. This chapter therefore investigates the concept of data altruism consent from a legislative perspective—the goal being to outline the legal challenges associated with providing consent. The chapter begins by explaining how this new concept has been established under the Data Governance Act, after which I discuss its application in the European health data space and how the consent interrelates with the newly established European health data space regulation.