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Bioethics in Iceland

Published online by Cambridge University Press:  28 May 2010

VILHJÁLMUR ÁRNASON
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Extract

Recent bioethics discussion and research in Iceland has been greatly affected by the fact that one of the world’s largest genetics research companies is based there and has been in the forefront of creating a population database resource for its research projects. Consequently, a large part of this article is centered around the bioethical discussion engendered by these projects, but other recent bioethical developments related to issues at the beginning and the end of life will also be discussed.

Type
Special Section: International Voices 2010
Information
Cambridge Quarterly of Healthcare Ethics , Volume 19 , Issue 3 , July 2010 , pp. 299 - 309
Copyright
Copyright © Cambridge University Press 2010

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References

1. See, for example Who Owns Our Genes? Proceedings of an International Conference. Nordic Council of Ministers; 2000:23–73; Greely, HT. Iceland’s Plan for Genomics Research: Facts and Implications. Jurismetrics 2000;40:153–191Google ScholarPubMed; Rose H. The Commodification of Bioinformation: The Icelandic Health Sector Database. Report The Wellcome Trust 2001.

2. Act on a Health Sector Database no. 139/1998, Art. 3.

3. Act on a Health Sector Database no. 139/1998, Art. 1.

4. The genetic database is covered by the Act on Biobanks no. 110/2000, the Patients’ Rights Act no. 74/1997, the Data Protection Act no. 77/2000, and other legislation. The genealogical database is covered by the Data Protection Act.

5. I have discussed all these at greater length in Árnason V. Coding and consent. Bioethics 2004;18:39–61.

6. The Act on a Health Sector Database no. 139/1998, Art. 3: “An individual shall be counted as personally identifiable if he can be identified, directly or indirectly, especially by reference to an identity number, or one or more factors specific to his physical, physiological, mental, economic, cultural or social identity.” This is in accordance with the European Data Protection Directive (95/46).

7. Recommendation No. R (97) 5 (50). However, the Act seems to use the more restrictive language of “Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.”

8. The Data Protection Commission’s definitions of technology, security, and organization terms that the Licensee must fulfill in relation to the preparation and operation of the HSD are found at http://www.personuvernd.is/english.

9. Cf. Árnason, E. Personal identifiability in the Icelandic Health Sector Database. The Journal of Information, Law and Technology 2002;2; available at: www2.warwick.ac.uk/fac/soc/law/elj/jilt/2002_2/arnason (last accessed 17 Oct 2008)Google Scholar.

10. The World Medical Association Declaration on Ethical Considerations regarding Health Databases, Art. 17: “Patients’ consent is needed if the inclusion of their health information on a database implies a disclosure to a third party or would permit access by people other than those involved in the patients’ care.” Available at www.wma.net/e/policy/d1.htm (last accessed 17 Oct 2008).

11. Merz JF, McGee GE, Sankar P. “Iceland Inc.” ?: On the ethics of commercial population genomics. Social Science & Medicine 2004;58:1201–9.

12. Fólk selji upplýsingar úr sjúkraskrám [People to sell information from health records]. The newpaper Morgunbladid, 13 Feb 2000.

13. See Helgason, HH, Gibbons, SMC. Certainty is absurd: Meeting information security requirements in laws on population genetic databases. Medical Law International 2008;9(2):151–68Google Scholar.

14. www.visindasidanefnd.is/Default.aspx?id=31&cmd=menu (last accessed 6 Oct 2008).

15. See the Data Protection Authority website: www.personuvernd.is/information-in-english/greinar//nr/437 (last accessed 6 Oct 2008).

16. This was characteristic for the position of the spokesmen of Mannvernd, Association for Ethics in Science and Medicine in Iceland. See, for example: Sigurdsson S. Decoding broken promises. Open Democracy 6 Mar 2003. Available at the Open Democracy website: www.opendemocracy.net/theme_9-genes/article_1024.jsp.

17. Gulcher, J, Stefánsson, K. The Icelandic Healthcare Database and informed consent. New England Journal of Medicine 2000;342:1827–30CrossRefGoogle ScholarPubMed.

18. The guidelines “on informed consent for participation in genetics research and/or research which is based on the use of biosamples” were accepted by the National Bioethics Committee in December 2001. They are published in Icelandic on the website of the National Bioethics Committee: http://www.visindasidanefnd.is/Default.aspx?id=49&cmd=menu (last accessed 7 Oct 2008).

19. My summary.

20. In other Nordic countries there are, for example, the Danish Ethics Council, the Norwegian Biotechnology Advisory Board, and the Swedish National Council on Medical Ethics.

21. Cf. Abbott, A. “Strengthened” Icelandic bioethics committee comes under fire. Nature 1999;400:602CrossRefGoogle ScholarPubMed.

22. Hákonarson, H, Gulcher, JR, Stefánsson, K. deCODE Genetics, Inc. company profile. Pharmacogenomics 2003;4(2):1–7, at p. 1CrossRefGoogle Scholar.

23. See note 22, Hákonarson et al. 2003:1.

24. Hjörleifsson, S. Genetics, risk and medicalization. A case study of preventive genetic technologies in Iceland. Doctoral thesis. University of Bergen, Norway, 2008Google Scholar. See also, Hjörleifsson, S, Árnason, V, Schei, E. Decoding the genetics debate—Hype and hope in Icelandic news media 2000 and 2004. New Genetics and Society 2008;27(4):377–94CrossRefGoogle Scholar.

25. See note 24, Hjörleifsson 2008:75.

26. For an account, see Árnason, V, Árnason, G. Informed democratic consent? The case of the Icelandic Database? Trames 2004;8:164–77Google Scholar.

27. See the website of deCODE genetics: www.decodeme.com/index/about (last accessed 7 Oct 2008).

28. Words of a spokesman of the company at a meeting sponsored by the Icelandic Medical Association on Nov. 27, 2007.

29. Consumer genetics [Neytendaerfðafræði], Morgunbladid 2007 Dec 29.

30. See homepage of the Ministry of health: http://eng.heilbrigdisraduneyti.is/laws-and-regulations/nr/685 (last accessed 9 Oct 2008).

31. Cf. Stem Cell Research in the Nordic Countries. Science, Ethics, Public Debate and Law. NordForsk Policy briefs 2007-2, 40–45.

32. For English summary, see the website of the Journal of the Icelandic Medical Association: www.laeknabladid.is/2003/6/fraedigreinar/nr/1328/ (last accessed 17 Oct 2008).

33. Cf. Árrnason V. Dialog und menschenwürde. Ethik im Gesundheitswesen [Dialogue and Respect for Persons. Ethics in Healthcare]. LIT-Verlag, Münster 2005:214.

34. Gottfredsdóttir, H, Sandall, J, Björnsdóttir, K. ‘This is just what you do when you are pregnant’: A qualitative study of prospective parents in Iceland who accept nuchal translucency screening. Midwifery 2009;25(6):711–20CrossRefGoogle Scholar.

35. A special issue of the Icelandic Medical Journal 2000;42 was devoted to this topic. Abstracts in English can be accessed at the journal's website: www.laeknabladid.is/2001/fylgirit/15/ (last accessed 15 Oct 2008).

36. Gottfredsdóttir H, Björnsdóttir K. “Have you had the test?” A discourse analysis of media presentation of prenatal screening in Iceland. Scandinavian Journal of Caring Sciences 2010;24:(in press).

37. Stefánsdóttir Á, Árnason V. Sjálfræði og aldraðir í ljósi íslenskra adstæðna. [Autonomy of the Elderly in Icelandic Nursing Homes]. Reykjavík: University of Iceland Press; 2004.

38. The Centre coordinated the research projects The Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison, ELSAGEN, financed between 2002 and 2004 by the European Commission’s Fifth Framework Programme, and The Ethics of Genetic and Medical Information, financed between 2002 and 2006 by the Nordic Academy for Advanced Study (NorFA). The results of these studies have appeared in Häyry, M, Chadwick, R, Árnason, V, Árnason, G. The Ethics and Governance of Human Genetic Databases. European Perspectives. Cambridge: Cambridge University Press; 2007CrossRefGoogle Scholar.