The Data Protection Directive (95/46/EC) allows Member States the option of implementing (with adequate safeguards) what might be described as 'Research Exemptions'. This allows for specific, limited derogations from the ordinary operation of the rights and duties of the Directive in the specific circumstances of scientific, historical and statistical purposes. This article argues that this option should be considered not as an 'exemption' (implying an 'abnormal' route), but as an equally acceptable route to achieve protection when secondary-processing data in large biobanks and data sets, operating without attending to any kind of consent. This can be done without reducing data subjects' privacy and related interests, through appropriate safeguards. We have suggested that such appropriate safeguards require research organisations to implement stringent security for the processing of data, robust assessment of proportionality, the possibility of opt-out for individuals, and introducing various forms of public participation.

Several categories of individuals may be interesting and interested publics in xenotransplantation. This is a field in which the importance of the potential risks that xenotransplants pose to society has been widely discussed. The point is that publics should not only be educated about the risk but should be given an opportunity to participate actively in the decision about whether and under what conditions they are exposed to the risk. Likewise, the boundaries between surveys, consultations and collection of advice may be blurred in actual practices. The hope remains that all different instruments either to collect or disseminate knowledge, and to explore new tools of governance may help connect science and policy to society in deeper and more complex ways. The next step points to a different meaning of public participation. It is shifting from participation as mere consensus and risk acceptance, to public engagement as a form of shared responsibility for risk control and regulatory decision-making.