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Bioethics in Iceland

Recent Developments

Published online by Cambridge University Press:  27 June 2016

VILHJÁLMUR ÁRNASON
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Abstract:

This article examines ethical issues debated in Iceland concerning population genetic research, specifically methods of collecting biosamples and ways to return clinically relevant results to participants. Also discussed are scientific research in the health sector, a bill on surrogacy, and a policy on consent for organ donation.

Keywords

population genetic researchbiosamplessurrogacyconsent for organ donation
Type
Special Section: Bioethics Beyond Borders
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Issue 3 , July 2016 , pp. 421 - 434
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

1. Árnason, V. Bioethics in Iceland. Cambridge Quarterly of Healthcare Ethics 2010;19(3):299–309.CrossRefGoogle Scholar

2. This case is described and analyzed from the point of view of biopolitics in Árnason V. Biological or democratic citizenship. In: Kakuk P, ed. Bioethics and Biopolitics. Dordrecht: Springer Verlag; forthcoming.

3. The criticism appeared in two short media announcements. The first, dated May 9, 2014, appeared widely in the media under the title “Gagnrýna lífsýnasöfnun ÍE” (Criticize the Collection of Biosamples by deCODE). This can be accessed at http://www.ruv.is/frett/gagnryna-lifsynasofnun-ie. The second, dated May 13, 2014, was a response to a declaration from a group of supporters of the campaign, “Viðbrögð við yfirlýsingu vísindamanna” (Response to the Declaration of Scientists). This can be accessed at http://www.dv.is/frettir/2014/5/14/sidfraedingar-svara-gagnryni-laekna-tilgangurinn-helgar-ekki-medalid/.

4. There was some discussion of this point in the Icelandic media. Some of the media actively supported the campaign, whereas others engaged in critical discussion, mostly based on the critical remarks of the group associated with the Centre for Ethics at the University of Iceland.

5. Cf. Rose, H.The commodification of bioinformation. The Icelandic Health Sector Database. London: The Wellcome Trust; 2001.Google Scholar

6. This declaration, titled “Yfirlýsing vísindamanna um Útkall í þágu vísinda í kjölfar yfirlýsingar siðfræðinga og nokkurra annarra fræðimanna” (Declaration of Scientists about the Urgent Call in the Service of Science in the Wake of a Declaration of Ethicists and Some Other Scholars) can be accessed at http://www.mbl.is/media/30/7630.pdf. It was signed by 36 people, most of whom are practicing physicians and researchers at the National University Hospital in Reykjavik.

7. Gulcher J, Stefansson K. An Icelandic saga on a centralized health care database and democratic decision making. Nature Biotechnology 1999 July;17:620.

8. Gulcher, J, Stefansson, K. The Icelandic Healthcare Database and informed consent. New England Journal of Medicine 2000;342(24):1827–30, at 1828.CrossRefGoogle ScholarPubMed

9. See note 8, Gulcher, Stefansson 2000, at 1829.

10. See note 8, Gulcher, Stefansson 2000, at 1829.

11. See note 8, Gulcher, Stefansson 2000, at 1829.

12. The issue of return is further discussed and analyzed in Árnason, V. Responsible return: Consent for feedback from biobanks research. In: Bobbert, M, Herrmann, B, Eckart, WU, eds. Ethics and Oncology: Therapy, Care, Research. Freiburg: Karl Alber Verlag; forthcoming.Google Scholar

13. Jolie A. My medical choice. New York Times 2013 May 14; available at http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=2& (last accessed 22 Sept 2015).

14. ÍE vill ná til allra arfbera [deCODE Genetics wants to contact all BRCA2 carriers]. Morgunblaðið [Icelandic newspaper] 2013 May 15; available at http://www.mbl.is/frettir/innlent/2013/05/15/e_vill_na_til_allra_arfbera/ (last accessed 22 Sept 2015).

15. 1200 íslenskar konur sem eru með yfir 80% líkur á að fá brjóstakrabbamein [1200 Icelandic women are at about 80% risk of getting breast cancer]. DV [Icelandic newspaper] 2013 May 15; available at http://www.dv.is/lifsstill/2013/5/15/ef-thad-er-ekki-greint-naegilega-snemma-tha-munu-thaer-deyja/ (last accessed 22 Sept 2015).

16. Vill láta konur í áhættuhópi vita [Wants to alert women at risk]. RÚV [Icelandic state radio] 2013 June 11; available at http://www.ruv.is/frett/vill-lata-konur-i-ahaettuhopi-vita (last accessed 22 Sept 2015).

17. Árnason V, Eyfjörð EE, Snædal J, Hjörleifsson S. Ætti að segja þátttakendum í vísindarannsóknum frá stökkbreytingum í þeirra eigin BRCA-genum? [Should participants in scientific research be told about transmutation in their own BRCA-genes?] Læknablaðið [Icelandic Medical Journal] 2015;100(3):178–9.

18. Kullmann K. Die Allmacht des Forschers [Interview]. Der Spiegel 2015;36(29.8):108–10, at 109.

19. Knoppers B, Joly Y, Simard J, Durocher F. The emergence of an ethical duty to disclose genetic research results: International perspectives. European Journal of Human Genetics 2006;14:1170–8, at 1172.

20. See note 19, Knoppers et al. 2006, at 1176.

21. Wolf, SM, Crock, BN, Van Ness, B, Lawrenz, FP, Kahn, JP, Beskow, LM, Cho, MK, et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine 2012;14(4):361–84, at 361.CrossRefGoogle ScholarPubMed

22. WHO. Genetic databases: Assessing the benefits and impact on human and patient rights. European Journal of Health Law 2004;11:79–84, at 81.

23. Cassa, AC, Savage, SK, Taylor, PL, Green, RC, McGuire, AL, Mandl, KD. Disclosing pathogenic genetic variants to research participants: Quantifying an emerging ethical responsibility. Genome Research 2012;22(3):421–8, at 422.CrossRefGoogle Scholar

24. See note 23, Cassa et al. 2012, at 422.

25. See note 22, WHO 2004, at 81.

26. See note 21, Wolf et al. 2012, at 376.

27. Wolf, SM, Lawrenz, FP, Nelson, CA, Kahn, JP, Cho, MK, Clayton, EW, et al. Managing incidental findings and research results in human subject research: Analysis and recommendations. J Law Med Ethics 2008;36(2):219–48.CrossRefGoogle Scholar

28. See note 21, Wolf et al. 2012, at 376.

29. See note 8, Gulcher, Stefansson 2000, at 1829.

30. Cf. Gottfreðsdóttir, H, Árnason, V.Bioethical concepts in theory and practice: An exploratory study of prenatal screening in Iceland. Medicine, Health Care and Philosophy 2011;14(1):53–61, at 57.CrossRefGoogle Scholar

31. Private conversation, 2012.

32. See note 21, Wolf et al. 2012, at 364.

33. Act on Scientific Research in the Health Sector; No. 44/2014; available at http://eng.velferdarraduneyti.is/media/acrobat-enskar_sidur/Health-Sector-Research-Act-No-44-2014.pdf (last accessed 1 Oct 2015).

34. See note 1, Árnason 2010, at 302–3.

35. See note 33, Act on Scientific Research in the Health Sector 2014.

36. Cf. Steinsbekk, KS, Myskja, BK, Solberg, B.Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics 2013;21:897–902.CrossRefGoogle Scholar

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

38. Frumvarp til laga um staðgöngumæðrun í velgjörðarskyni [Bill on altruistic surrogacy]; available at http://www.althingi.is/altext/144/s/1141.html (last accessed 7 Oct 2015).

39. See note 38, Bill on altruistic surrogacy (comment on Article 4).

40. See note 1, Árnason 2010, at 306.

41. Kárason S, Jóhannsson R, Gunnarsdóttir K, Ásmundsson P, Sigvaldason K. Líffæragjafir á Íslandi 1992–2002 [Organ donation in Iceland 1992–2002]. Læknablaðið [Icelandic Medical Journal] 2005;91(5):417–22.

42. See note 1, Árnason 2010, at 306.