Ever since the proposal for the GDPR emerged in early 2012, one of the central questions for the scientific community was how to find a fair balance between safeguarding data privacy of research participants, whilst not placing undue obstacles to scientific research. Agreeing on a balance that is clustered under Article 89 of the GDPR was neither an easy nor a straightforward task. Reasons include, for example, the diversity of types of research that are captured under this very same regime, as well as different research traditions, historical experiences, and societal values that have shaped national frameworks and understandings of how research should be carried out. The outcome is reflected in a multitiered regime that can be further be shaped either by the EU itself or the Member States.
For the biobanking community, the GDPR has brought several challenges that need overcoming. Among the central ones is the necessity to adjust the established practices to the enhanced data protection requirements. Overcoming this challenge requires a detailed understanding of the requirements that the GDPR imposes, which is not always a straightforward task. Another challenge is navigating these divergences in collaborative scientific research. Key there is understanding these divergences and finding room for collaborations.
The book “GDPR and Biobanking. Individual Rights, Public Interest and Research Regulation across Europe” brings together over 40 scholars and biobankers with a view to examine the GDPR research regime in biobanking starting with the research exception enabled through Article 89 of the GDPR. In 23 chapters, it scrutinizes to detail the GDPR research regime, its objective and constituting elements, its impact on biobanking, as well as its role in a changing EU landscape, especially post-Brexit arrangements. It also reviews how various derogations have been implemented nationally, and what challenges and opportunities this diversification can bring. It thereby captures the complexity the GDPR creates for biobanking and sheds light on various approaches to tackling the challenges that have emerged.
Thanks to the generosity of BBMRI-ERIC, the book is available as an open access source. Please visit https://link.springer.com/book/10.1007%2F978-3-030-49388-2 to download it.
Author: Santa Slokenberga,Senior Lecturer in Administrative Law, Department of Law, Uppsala University