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Tackling Epistemological Naivety: Large-Scale Information Systems and the Complexities of the Common Good

Published online by Cambridge University Press:  16 August 2011

Extract

We have arrived at a situation in which policymakers and ethicists are considering abandoning informed consent in the governance of certain new technologies, many of which are related to large-scale information systems. A paradigm case is the problem with using individuals’ informed consent to regulate biobanks. As sometimes suggested, there is a need for “new ethical frameworks.”

Type
Special Section: From Informed Consent to No Consent?
Copyright
Copyright © Cambridge University Press 2011

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References

1. See for instance Chadwick, R, Berg, K.Solidarity and equity: New ethical frameworks for genetic databases. Nature Reviews Genetics 2001;(2):318–21CrossRefGoogle ScholarPubMed; Javitt, G.Why not take all of me? Reflections on The Immortal Life of Henrietta Lacks and the status of participants in research using human specimens. Minnesota Journal of Law, Science & Technology 2010;11(2):713–55.Google Scholar

2. See note 1, Chadwick, Berg 2001.

3. Knoppers, B, Chadwick, R. Human genetic research: Emerging trends in ethics. Nature Reviews Genetics 2005;(6):75–7.CrossRefGoogle ScholarPubMed

4. Barroso JM. Political Guidelines for the Next Commission; available at http://ec.europa.eu/commission_2010-2014/president/pdf/press_20090903_en.pdf (last accessed 27 Apr 2010).

5. Jonas, H.Philosophical reflections on experiment. Daedalus: Journal of the American Academy of Arts and Sciences 1969;(98):221.Google Scholar

6. Norwegian Institute of Public Health. Gode helseregistre—bedre helse: Strategi for modernisering og samordning av sentrale helseregistre og medisinske kvalitetsregistre 2010–2020. Hovedrapport fra forprosjektet Nasjonalt helseregisterprosjekt (only available in Norwegian).

7. The DPA was also listed as a member of the working group writing the initial white paper. In the final version of the document, however, the DPA is nowhere to be found.

8. The Norwegian Board on Biotechnology. Høringssvar: Gode helseregistre bedre helse (strategi for modernisering og samordning av sentrale helseregistre og medisinske kvalitetsregistre); available at http://www.bion.no/filarkiv/2010/07/2010_03_25_gode_helseregistre_-_bedre_helse_uttalelse.pdf (last accessed 29 Apr 2010).

9. Minutes from Norwegian Parliamentary Debate 22 March. My translation; original document available in Norwegian at http://www.stortinget.no/no/Saker-og-publikasjoner/Publikasjoner/Referater/Stortinget/2009-2010/100322/4/#a8 (last accessed 8 May 2010).

10. Callahan, D.Individual good and common good: A communitarian approach to bioethics. Perspectives in Biology and Medicine 2003;(46):496507.CrossRefGoogle ScholarPubMed

11. Jain, AK, Flynn, PJ, Ross, AA, eds. Handbook of Biometrics. New York: Springer; 2008.CrossRefGoogle Scholar

12. Different schools of thought describe securitization differently. One notable contribution is Buzan, B, Wæver, O, de Wilde, J.Security: A New Framework for Analysis. Boulder, London: Lynne Rienner; 1998.Google Scholar

13. See for instance Van der Ploeg, I.The illegal body: “Eurodac” and the politics of biometric identification. Journal of Ethics and Information Technology 1999;(1):295302.CrossRefGoogle Scholar

14. European Commission. Commission Communication of 24 November 2005 on Improved Effectiveness, Enhanced Interoperability and Synergies among European Databases in the Area of Justice and Home Affairs. COM(2005) 597 final.

15. See, for instance, House of Lords European Union Committee. 9th Report of Session 2006–2007. Schengen Information System II (SIS II); available at http://www.publications.parliament.uk/pa/ld200607/ldselect/ldeucom/49/49.pdf (last accessed 14 May 2010).

16. See note 14, European Commission 2005:3.

17. Hobbing P. An Analysis of the Commission Communication (Com(2005) 597 Final of 24.11.2005) on Improved Effectiveness, Enhanced Interoperability and Synergies among European Databases in the Area of Justice and Home Affairs. Briefing Paper: 2006. Quoted from http://www.libertysecurity.org/article1182.html(last accessed 14 May 2010).

18. Here I should also mention that the principles established by the EU Data Protection Directive have not been valid for police and security issues, i.e., the so-called third pillar of the European Union, now removed by the Lisbon Treaty. Nevertheless, the directive remained the golden standard for this area; see De Hert, P, Papakonstantinou, V.The data protection framework decision of 27 November 2008 regarding police and judicial cooperation in criminal matters—A modest achievement however not the improvement some have hoped for. Computer Law & Security Review 2009;(25):403–14.CrossRefGoogle Scholar

19. Cited from Bunyan, T.The Shape of Things to Come: The EU Future Group. Nottingham: Spokesman Books; 2009:11.Google Scholar

20. The communitarian debate mainly belongs in the United States and does not have a direct counterpart in Europe. One main proponent of communitarian principles in the governance of biometric systems is the U.S. sociologist Amitai Etzioni; see, for instance, Etzioni, A.The Common Good. Oxford: Polity Press; 2004.Google Scholar

21. Bennet, CJ, Raab, CD.The Governance of Privacy: Policy Instruments in Global Perspective. Aldershot: Ashgate; 2003:15.Google Scholar

22. Warren, S, Brandeis, L.The right to privacy. Harvard Law Review 1890:IV(5)Google Scholar; available at http://faculty.uml.edu/sgallagher/Brandeisprivacy.htm (last accessed 18 May 2010).

23. According to Hanna Arendt, “privacy” only emerged as a countercultural force in the face of expanding state bureaucracies and capitalist production systems. On this account, privacy can be seen as a (feeble) attempt to reclaim individual subjectivity and uniqueness in an ever-objectifying world. Arendt, H.The Human Condition. Chicago: University of Chicago Press; 1998.CrossRefGoogle Scholar

24. EP LIBE-Background “Schengen Information System” of 10 April 2005; available at www.europarl.eu.int/comparl/libe/elsj/zoom_in/25_en.htm (last accessed 21 May 2010).

25. See, for instance, Liberatore, A.Balancing Security and Democracy: The Politics of Biometric Identification in the European Union. EUI Working Paper RSCAS, 2005 (30);Google ScholarBalzacq, T, Carrera, S, eds. Security versus Freedom? A Challenge for Europe’s Future. Aldershot: Ashgate; 2006.Google Scholar

26. See, for instance, Rose, H.The Commodification of Bioinformation: The Icelandic Health Sector Database. London: Wellcome Trust; 2001.Google Scholar

27. Goldstein, J, Angeletti, R, Holzbach, M, Konrad, D, Snijder, M, Rotter, P.Large-Scale Biometrics Deployment in Europe: Identifying Challenges and Threats. Seville: European Commission Joint Research Centre Institute for Prospective Technological Studies; 2008.Google Scholar

28. Available at http://www.worldprivacyforum.org/medicalidentitytheft.html (last accessed 21 May 2010).

29. As is the case with any process of identity (individual and collective) and identification; see Jenkins, R.Social Identity. New York and London: Routledge; 1996.CrossRefGoogle Scholar

30. Lyon, D.Identifying Citizen: ID Cards as Surveillance. Oxford: Polity Press; 2009.Google Scholar

31. Available at http://en.wikipedia.org/wiki/Identity_management (last accessed 22 May 2010).

32. Lessig, L.Code Version 2.0. New York: Basic Books; 2006.Google Scholar

33. For a similar line of argument see O’Neill, O.Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press; 2002.CrossRefGoogle Scholar

34. I mean inter alia pragmatics and hermeneutics in philosophy and, in the social sciences, specifically those oriented toward interactionist perspectives, such as large parts of science and technology studies (STS).