Abstract
The coming into force of the General Data Protection Regulation (GDPR) on 25 May 2018 has brought about considerable changes in how data may collected, stored and used. Biobanks, which require the collection, use and re-use of large quantities of biological samples and data, will be affected by the proposed changes. In seeking to require ‘data protection by design’, the GDPR provides data subjects with certain individual rights. They are, the right to be informed, the right of access, the right to rectification, the right to erasure, the right to restrict processing, the right to data portability, the right to object and rights in relation to automated decision making and profiling.
This chapter will consider each of these individual rights in turn and discuss the impact on biobank research. In particular, it will discuss the challenges that are now facing biobanks in upholding the individual rights, the limits of these rights in light of the technical realities of biobanks, and the potential impact that they may have on the collection, sharing, use and re-use of biological data and material.