Scientific Citizenship, Benefit, and Protection in Population-Based Research

Abstract

In the discussion of ethical issues concerning databases as resources for population research, two main positions have been predominant. On the one hand, a major emphasis has been on protecting the participants from being discriminated against or having their privacy violated. The other main emphasis has been on the substantial benefits that can be reaped from the research. I show how these often conflicting positions share an important underlying and hidden presumption, implying a too narrow vision of the citizen as a passive participant. I argue that it is important to explore alternative visions of the citizens in relation to population database research. For this purpose, I ask whether recent ideas of deliberative democracy and scientific citizenship provide us with a viable guiding vision of how to facilitate a more active and informed public engagement in database research society. I flesh out my ideas in terms of the debate about consent for participation in database research and show how different models of consent imply different visions of the citizen. I argue that a dynamic authorization model with an opt-out clause could contribute to conditions for more informed, active and critically aware citizens.