Scientific Citizenship, Benefit, and Protection in Population-Based Research
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.
KeywordsDatabase Research Deliberative Democracy Institutional Trust Public Deliberation Democratic Citizen
Unable to display preview. Download preview PDF.
- Arblaster A (1987) Democracy. University of Minnesota Press, MinneapolisGoogle Scholar
- Benhabib S (1996) Toward a deliberative model of democratic legitimacy. In: Benhabib S (Ed.) Democracy and Difference: Contesting the Boundaries of the Political. Princeton University Press, Princeton, pp 67–94Google Scholar
- Cohen J (1997) Deliberation and democratic legitimacy. In: Bohman J, RehgW(Eds.) Deliberative Democracy: Essays on Reason and Politics. The MIT press, Cambridge, MA, pp 67–91Google Scholar
- Foucault M (1980) Two lectures. Lecture two. In: Gordon C (Ed.) Power/Knowledge. The Harvester Press, Brighton, pp 92–108Google Scholar
- Kaye J (2004) Broad consent — the only option for population genetic databases. In: Árnason G et al. (Eds.) Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases. University of Iceland Press, Reykjav´ık, pp 103–109Google Scholar
- Kristinsson S (2006) Autonomy and informed consent: a mistaken association? Med Health Care Philos 10:253–264Google Scholar
- Marshall TH (1950) Citizenship and Social Class and Other Essays. Cambridge University Press, CambridgeGoogle Scholar
- Rose H (2001) The Commodification of Bioinformation: The Icelandic Health Sector Database. The Wellcome Trust.Google Scholar
- Rose N, Novas C (2005) Biological citizenship. In: Ong A, Collier SJ (Eds.) Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Blackwell Publishing, Oxford, pp 439–463Google Scholar
- Sandel M (1982) Liberalism and the Limits of Justice. Cambridge University Press, CambridgeGoogle Scholar