Anonymity and Privacy in Biobanking

The present book chapter intends to provide a conceptual framework on the use and misuse of anonymity in biobank projects. The major point of departure is the comparative analysis of various functions of anonymity in the biomedical field. By applying this method, the authors also highlight differences between traditional and contemporary notions anonymity. The other aim of the chapter is to distinguish between the overlapping terms of confidentiality, anonymity, data protection, and privacy. While medical guidelines focus on the notion and technicalities of anonymisation, legal provisions are based on the pillars of data protection norms, such as the possibility of identification, and the attachment to the original goal of data processing. The difference between these approaches resulted in various forms of ambiguities in the practice of biobanks. In addition to offering a theoretical framework, the authors analyze numerous models for regulation, with examples mainly from the Central and Eastern European region. The overview of the functions of anonymity reveals also to what extent anonymity can be regarded as an efficient solution for the regulatory challenges. The authors sketch out the most influential regulatory positions and analyze them critically, using a multidisciplinary approach.