Privacy Interests in Biobanking: A Preliminary View on a European Perspective

There is certainly an interest in biobanking and research using genetic information in Europe. It offers great possibilities in health care, both at the level of understanding disease and potentially enabling the production of new and more effective therapies and diagnoses, and so it has implications for European commerce and public health. Europe has a developing tradition in this field, of protecting the fundamental rights and freedoms of its citizens, for example through data protection.1 However, the new genetic data processing possibilities are in potential conflict with these fundamental rights, because the real research value of biobanking and research using genetic data will be in its relation to the medical and environmental life-story of the data subject. Further, the information contained in the samples is not simply information about the donor data subject; at the same time it discloses information about others who are genetically related to the donor subject. The nature of this information makes it not only attractive for a new generation of medical researchers, but also for a new generation of policy/decision-makers. It allows the potential for understanding the origins of disease, and promises more tailored drug regimes, but at the same time in other hands it allows for risk assessments which could be used to express preferences between individuals or groups of individuals in employment or insurance. It could be the basis of positive medical advance, and of discriminatory social retreat. It is therefore a matter for regulation.