ABSTRACT

Biobanks, biorepositories or bioresources, terms used interchangeably in the literature, denote resources for storing biological samples and data to support the discovery of biomarkers, therapeutic targets and the underlying causes of diseases (Betsou et al. 2004). The importance of these repositories is that they store and maintain quality controlled and standardized samples (Patel et al. 2005), which can be used by many different researchers for many different purposes. The Irish Prostate Cancer Research Consortium (PCRC) has developed a research biobank for prostate cancer tissue, blood, urine and DNA. Ensuring the confidentiality of participants’ data is one of the major requirements of biobanks and their associated data management systems. The PCRC biobank has adopted best practice based on the requirements of national legislation and regulations regarding data protection. This chapter will provide an overview of participant confidentiality and the methods used to protect data which identifies participants. It will discuss the challenges in applying the principles of Data Protection legislation and discuss how these are addressed by the PCRC biobank and the development of its associated Biobank Information Management System (BIMS). The infrastructure of the PCRC BIMS and its sample management system will be described. Finally, an explanation of how the PCRC biobank adheres to best practice is provided in the conclusion.