The protection of human biodata: Is there any role for data ownership?

Abstract

In the area of human biodata governance, one of the most pressing questions is how to address the tension between fostering innovation and protecting the fundamental rights and freedoms that arise from the development, deployment, and use of AI and data processing. On the one hand, data collected and stored in biobanks hold great promise, particularly for improving health care. However, the improper handling of these vast amounts of biodata also raises unresolved legal and ethical issues. This article aims to contribute to the debate on the protection of human biodata by examining the EU acquis on data ownership and questioning whether there is any role for data ownership. On the basis of de lege lata, this paper argues that there is no such ownership protection for human biodata, but there are some indications. On the basis of de lege feranda, through a doctrinal legal analysis, it argues that biodata should not be subject to general ownership rights without a specific justification demonstrating the need for ownership of data from an economic and social perspective.