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Database Research: Public and Private Interests

Published online by Cambridge University Press:  16 August 2011

VILHJÁLMUR ÁRNASON
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Extract

It is often argued that a major tension in bioethics is between protecting the private interests of individuals on one hand and contributing to the common good on the other. In this article I ask how fitting this description is as regards the interest at stake in relation to the issue of consent to participation in population data collections. I raise some doubts about what I take to be two common positions regarding public and private interests in this context. The first is that restricted individual consent protects private interests at the cost of public interest.

Type
Special Section: From Informed Consent to No Consent?
Information
Cambridge Quarterly of Healthcare Ethics , Volume 20 , Issue 4 , October 2011 , pp. 563 - 571
Copyright
Copyright © Cambridge University Press 2011

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References

1. Cf. Árnason, G. On human genetic databases. In: Häyry, M, Chadwick, R, Árnason, V, Árnason, G, eds. The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge: Cambridge University Press; 2007:11–3.CrossRefGoogle Scholar

2. World Health Organization. Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights. European Partnership on Patients’ Rights and Citizens’ Empowerment. Geneva: WHO; 2003:3Google Scholar; available at www.codex.vr.se/texts/whofinalreport.rtf (last accessed 27 Jan 2011).

3. Kristinsson, S, Árnason, V. Informed consent and human genetic database research. In: Häyry, M, Chadwick, R, Árnason, V, Árnason, G, eds. The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge: Cambridge University Press; 2007:199–216.CrossRefGoogle Scholar

4. Cf. Hoeyer, K, Mjörndal, T, Olofsson, BO, Lynöe, N.Informed consent and biobanks: A population-based study of attitudes towards tissue donation for genetic research. Scandinavian Journal of Public Health 2004;32:224–9.CrossRefGoogle Scholar

5. Takala, T. Why we should not relax ethical rules in the age of genetics. In: Árnason, G, Nordal, S, Árnason, V, eds. Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases. Reykjavik: University of Iceland Press; 2004:135–40, at 139–40.Google Scholar

6. O’Neill, O.Informed consent and genetic information. Studies in the History and Philosophy of Biological and Biomedical Sciences 2001;32:689–704, at 701.CrossRefGoogle Scholar

7. Manson, NC, O’Neill, O.Rethinking Informed Consent in Bioethics. Cambridge: Cambridge University Press; 2007:25.CrossRefGoogle Scholar

8. Kristinsson, K.The Belmont Report’s misleading conception of autonomy. Virtual Mentor. American Medical Association Journal of Ethics 2009;11:611–6.Google ScholarPubMed

9. Cf. Greely, H.Breaking the stalemate: A prospective regulatory framework for unforeseen research uses of human tissue samples and health information. Wake Forest Law Review 1999;34:737–66Google Scholar; Caulfield, T, Upshur, REG, Daar, A.DNA databanks and consent: A suggested policy option involving an authorization model. BMC Medical Ethics 2003:4Google ScholarPubMed; available at http://www.biomedcentral.com/1472-6939/4/1 (last accessed 27 Jan 2011); Árnason, V.Coding and consent. Moral complications of the Icelandic database project. Bioethics 2004;18:39–61CrossRefGoogle Scholar; Kaye, J. Broad consent — the only option for population genetic databases. In: Árnason, G, Nordal, S, Árnason, V, eds. Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases. Reykjavik: University of Iceland Press; 2004:103–9.Google Scholar

10. Cf. Sandel, M.Liberalism and the Limits of Justice. Cambridge: Cambridge University Press; 1982.Google Scholar

11. Austin, MA, Harding, S, McElroy, C.Genebanks: A comparison of eight international genetic databases. Community Genetics 2003;6:37–45, at 42.Google ScholarPubMed

12. Hedgecoe, A.The Politics of Personalized Medicine: Pharmacogenetics in the Clinic. Cambridge: Cambridge University Press; 2004:16–17.CrossRefGoogle Scholar

13. Hakonarson, H, Gulcher, JR, Stefansson, K.deCODE Genetics Inc. company profile. Pharmacogenomics 2003;4:1–7, at 7.CrossRefGoogle Scholar

14. Cf. Smart, A, Martin, P, Parker, M.Tailored medicine: Whom will it fit? The ethics of patient and disease stratification. Bioethics 2004;18:322–42.CrossRefGoogle Scholar

15. Halliday, JL, Collins, VR, Aitken, MA, Richards, MPM, Olsson, CA.Genetics and public health—evolution or revolution? Journal of Epidemiology and Community Health 2004;58:894–9.CrossRefGoogle ScholarPubMed

16. See, for example, Ost, D.The “right” not to know. Journal of Medicine and Philosophy 1984;9:301–12.CrossRefGoogle ScholarPubMed

17. See, for example, Press, N, Fishman, JR, Koenig, BA.Collective fear, individualized risk: The social and cultural context of genetic testing for breast cancer. Nursing Ethics 2000;7:237–49.CrossRefGoogle ScholarPubMed

18. www.decodeme.com/genes-and-health (last accessed 21 Jan 2011).

19. For a short overview, see Stefánsdóttir, Á. The sale of genetic information: Ethical aspect of genetic analysis. In: Tupesala, A, ed. Consumer Medicine. Copenhagen: Nordic Council; 2010:27–38.Google Scholar

20. See note 19, Stefánsdóttir 2010, at 35.

21. Árnason, V. Scientific citizenship, benefit, and protection in population based research. In: Solbakk, JH, Holm, S, Hoffman, B, eds. Ethics of Research Biobanking. Dordrecht: Springer Verlag; 2009:131–41.CrossRefGoogle Scholar

22. See note 6, O’Neill 2001, at 702.

23. Chambers, S.Deliberative democratic theory. Annual Review of Political Science 2003;6:307–26, at 309.CrossRefGoogle Scholar

24. Rawls J. Justice as fairness: A restatement. In: Kelly E, ed. Cambridge (MA): Harvard University Press; 2001:18–24.

25. Crick, B.Education for Citizenship and the Teaching of Democracy in Schools: Final Report of the Advisory Group on Citizenship. London: Qualifications and Curriculum Authority; 1998:9.Google Scholar

26. Cf. Kristinsson, S.Autonomy and informed consent. A mistaken association. Medicine, Health Care and Philosophy 2007;10:253–64.CrossRefGoogle Scholar

27. Powell, MC, Colin, M.Meaningful citizen engagement in science and technology: What would it really take? Science Communication 2008;30:126–36.CrossRefGoogle Scholar

28. Felt, U, Fochler, M, Müller, A, Strassnig, M.Unruly ethics: On the difficulties of a bottom-up approach in ethics in the field of genomics. Public Understanding of Science 2009;18:354–71.CrossRefGoogle Scholar

29. Irwin, A.Constructing the scientific citizen: Science and democracy in the biosciences. Public Understanding of Science 2001;10:1–18, at 16.CrossRefGoogle Scholar

30. See note 24, Rawls 2001:23.