Ethic and Biobanks: What Are the Steps Needed to Implement Bioethical Issues in a Population-Based and Disease-Based Biobank?

The bioethical issues faced by a population and disease biobank are addressed in the light of three challenges. The first concerns the adoption of strategies to improve and maintain the quality of biological samples and a management system based on the best standard operating procedures. The essential value of a biobank lies in transforming ‘residual biological materials’ into essential information to improve the health of the population. Research is ‘ethical’ if it is of good quality. The second challenge, which is central to a population biobank, is to match the ‘trust’ of the citizens with the reliability of ‘participatory’ governance. A biobank can fulfil its mission as a ‘service unit’ through the involvement of all the relevant actors: citizens, researchers, and public and private stakeholders. The third challenge is to interpret the shift from the paradigm of ‘property rights’ to the different paradigm of ‘personality rights’. Citizens’ privacy must be understood not as a ‘limitation’ but as a ‘resource’, capable of strengthening research that respects the dignity of the individual, while at the same time being able to answer the increasing number of questions imposed by public and individual health.