ABSTRACT
In addition to the numerous tissue and other DNA collections which exist in many hospitals, tissue and blood banks, pathology laboratories and the like, new and major prospective ‘biobank’ collections are being established. These are structured resources comprising collections of human genetic samples and relevant personal information (including health, family history, lifestyle etc.) (OECD 2008). The object of such collections is to create a resource for large scale, longitudinal genetic research projects to facilitate population health research through a better understanding of the role of genetics in disease. Over the last decade, a number of such population databanks or ‘biobanks’ have been established in several countries (Cambon-Thomsen 2004), including the Icelandic Health Sector Database, the Estonian Genome Project, UK Biobank, and the CARTaGENE project in Quebec, and others are planned including the Joondalup Family Health Study in Western Australia. Through the study of gene-environment interactions in populations over many years, such initiatives hold great potential for human genetic research and resulting advancement in the health of the population. Undoubtedly, however, they also pose a number of legal as well as ethical and regulatory challenges (Cambon-Thomsen et al. 2007). One such challenge relates to participant consent to biobanking which is the focus of this chapter.
