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

  • Vilhjálmur Árnason


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.


Database Research Deliberative Democracy Institutional Trust Public Deliberation Democratic Citizen 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. Arblaster A (1987) Democracy. University of Minnesota Press, MinneapolisGoogle Scholar
  2. Árnason V (2004) Coding and consent: moral challenges of the database project in Iceland. Bioethics 18:27–49PubMedCrossRefGoogle Scholar
  3. Árnason V, Hjo¨rleifsson S (2007) Geneticization and bioethics: advancing debate and research. Med Health Care Philos 10:417–431PubMedCrossRefGoogle Scholar
  4. Árnason V, Hjo¨rleifsson S (2008) Population databanks and democracy in light of the Icelandic experience. In: Launis V, Rä ikkä J (Eds.) Genetic Democracy. Springer Verlag, Heidelberg, pp 93–104CrossRefGoogle Scholar
  5. 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
  6. Caulfield T et al. (2003) DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics 4:1CrossRefGoogle Scholar
  7. 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
  8. Foucault M (1980) Two lectures. Lecture two. In: Gordon C (Ed.) Power/Knowledge. The Harvester Press, Brighton, pp 92–108Google Scholar
  9. Greely H (1999) Breaking the stalemate: a prospective regulatory framework for unforeseen research uses of human tissue samples and health information. Wake Forest Law Rev 34:737–766PubMedGoogle Scholar
  10. Greely H (2000) Iceland’s plan for genomics research: facts and implications. Jurimetrics 40:153– 191PubMedGoogle Scholar
  11. Gulcher J, Stef´ansson K (2000) The Icelandic healthcare database and informed consent. N Engl J Med 342:1827–1830PubMedCrossRefGoogle Scholar
  12. Hoeyer K et al. (2004) Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 32:224–229PubMedCrossRefGoogle Scholar
  13. Hoeyer KL, Tutton R (2005) ‘Ethics was here’: studying the language-games of ethics in the case of UK biobank. Crit Public Health 15:385–397CrossRefGoogle Scholar
  14. Irwin A (2001) Constructing the scientific citizen: science and democracy in the biosciences. Public Underst Sci 10:1–18CrossRefGoogle Scholar
  15. 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
  16. Kristinsson S (2006) Autonomy and informed consent: a mistaken association? Med Health Care Philos 10:253–264Google Scholar
  17. Kristinsson S, Árnason V (2007) Informed consent and human genetic database research. In: Hä yry M et al. (Eds.) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge University Press, Cambridge, pp 199–216CrossRefGoogle Scholar
  18. Marshall TH (1950) Citizenship and Social Class and Other Essays. Cambridge University Press, CambridgeGoogle Scholar
  19. O’Neill O (2001) Informed consent and genetic information. Stud Hist Philos Biol Biomed Sci 32:689–704CrossRefGoogle Scholar
  20. Rose H (2001) The Commodification of Bioinformation: The Icelandic Health Sector Database. The Wellcome Trust.Google Scholar
  21. 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
  22. Sandel M (1982) Liberalism and the Limits of Justice. Cambridge University Press, CambridgeGoogle Scholar

Copyright information

© Springer Science + Business Media, LLC 2009

Authors and Affiliations

  • Vilhjálmur Árnason
    • 1
  1. 1.Department of Philosophy and Centre for EthicsUniversity of IcelandReykjavikIceland

Personalised recommendations