Human genetic databanks are, on a local and limited scale, a reality in all countries where healthcare systems are reasonably advanced. Tissue samples, which can be genetically analysed, have for some time been stored in hospitals and laboratories for various medical and scientific reasons. It was not, however, until plans for wider genetic databanks were introduced that governments and the international bioethics community started to discuss seriously the ethical, legal and sociocultural issues involved in storing genetic information.

Our task in the ELSAGEN (Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison) project during 2002–2004 was to prepare a philosophical analysis of the main ethical concepts and principles used in debates concerning nationwide genetic databanks. Particular attention was to be paid to the possible differences between the most prominent American and European approaches to the matter. The following preliminary account was produced at the early stages of the ELSAGEN project – before we had received any knowledge about the results of the other research teams. It therefore formed a hypothesis for our subsequent work rather than establishing any normative conclusions.

From a false start to a new beginning

Our original hypothesis was that there must be a clear distinction between the American and European approaches to the ethics of human genetic databanking. This is a view held by many philosophers and ethicists in continental Europe, and it reflects the plausible idea that there can be insurmountable cultural differences between Americans and Europeans.