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Database Research: Public and Private Interests
Published online by Cambridge University Press: 16 August 2011
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.
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- Special Section: From Informed Consent to No Consent?
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- Copyright © Cambridge University Press 2011
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
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
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