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In Defense of Broad Consent

  • GERT HELGESSON
Extract

Proper procedures for informed consent are widely recognized as an ethical requirement for biomedical research involving human beings, in particular as a means to respect the autonomy and personal integrity of potential and actual research participants.

Copyright
COPYRIGHT: © Cambridge University Press 2011
References
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1. Beauchamp, T, Childress, R.Principles of Biomedical Ethics, 6th ed.New York: Oxford University Press; 2009.

2. Elger, BS, Caplan, AL.Consent and anonymization in research involving biobanks. EMBO Reports 2006;7:661–6.

3. Knoppers, BM.Biobanking: International norms. Journal of Law, Medicine & Ethics 2005;33:7–14.

4. Maschke, KJ.Navigating an ethical patchwork—human gene banks. Nature Biotechnology 2005;23(5):539–45.

5. Van Veen, BE.Human tissue bank regulations. Nature Biotechnology 2006;24(5):496–7.

6. Árnason, V.Coding and consent: Moral challenges of the database project in Iceland. Bioethics 2004; 18:27–49.

7. Caulfield, T.Biobanks and blanket consent: The proper place of the public good and public perception rationales. Kings Law Journal 2007;18:209–26.

8. Elger, B. Consent and use of samples. In: Elger, B, Biller-Andorno, N, Mauron, A, Capron, AM, eds. Ethical Issues in Governing Biobanks: Global Perspectives. Burlington, VT: Ashgate, 2008:57–88.

9. Hofmann, B.Broadening consent—and diluting ethics? Journal of Medical Ethics 2009;35:125–9.

10. Cambon-Thomsen, A, Rial-Sebbag, E, Knoppers, BM.Trends in ethical and legal frameworks for the use of human biobanks. European Respiratory Journal 2007;30:373–82.

11. Haga, SB, Beskow, LM.Ethical, legal, and social implications of biobanks for genetic research. Advances in Genetics 2008;60:505–44.

12. Hansson, MG, Dillner, J, Bartram, CR, Carlson, JA, Helgesson, G.Should donors be allowed to give broad consent to future biobank research? Lancet Oncology 2006;7(3):266–9.

13. Petrini, C. “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Social Science & Medicine 2010;70:217–20.

14. See note 1, Beauchamp, Childress 2009.

15. Faden, R, Beauchamp, T.A History and Theory of Informed Consent. Oxford: Oxford University Press; 1986.

16. Eriksson, S, Helgesson, G.Potential harms, anonymization, and the right to withdraw consent to biobank research. European Journal of Human Genetics 2005;13:1071–6.

17. See note 12, Hansson et al. 2006.

18. Dillner, J, Lenner, P, Lehtinen, M, Eklund, C, Heino, P, Wiklund, F, et al. . A population-based seroepidemiological study of cervical cancer. Cancer Research 1994;54:134–41.

19. Sigstad, E, Lie, AK, Luostarinen, T, Dillner, J, Jellum, E, Lehtinen, M, et al. . A prospective study of the relationship between prediagnostic human papillomavirus seropositivity and HPV DNA in subsequent cervical carcinomas. British Journal of Cancer 2002;87:175–80.

20. See note 12, Hansson et al. 2006 and see note 13, Petrini 2010.

21. See notes 10–13.

22. See note 6, Árnason 2004, at 41.

23. See note 8, Elger 2008, at 57.

24. See note 7, Caulfield 2007, at 213.

25. See note 8, Elger 2008:57, and see note 9, Hofmann 2009.

26. See note 1, Beauchamp, Childress 2009.

27. See note 12, Hansson et al. 2006.

28. See note 9, Hofmann 2009.

29. Lynöe, N, Hoeyer, K.Quantitative aspects of informed consent: Considering the dose response curve when estimating quantity of information. Journal of Medical Ethics 2005;31:736–8.

30. Harmon, A.Indian tribe wins fight to limit research of its DNA. The New York Times 2010 Apr 21.

31. Harmon, A.Havasupai case highlights risks in DNA research. The New York Times 2010 Apr 22.

32. Harmon, A.Where’d you go with my DNA? The New York Times 2010 Apr 24.

33. See note 30, Harmon 2010 Apr 21.

34. Rubin, P.Havasupai tribe win nice settlement from ASU in scandalous blood-sample case. Phoenix New Times 2010 Apr 22.

35. Hofmann, BM.Bypassing consent for research on biological material. Nature Biotechnology 2008;26(9):979–80.

36. Shickle, D.The consent problem within DNA biobanks. Studies in History and Philosophy of Biological and Biomedical Sciences 2006;37:503–19, at 516.

I would like to thank Niklas Juth, Niels Lynöe, Manne Sjöstrand, and participants at the conference “Is Medical Ethics Really in the Best Interest of the Patient?” in Uppsala, the International Bioethics Retreat in Paris, and the World Congress of Bioethics in Singapore, all in 2010, for valuable comments on earlier versions of this article.

This article is written as part of a project financially supported by the Swedish Cancer Society.

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Cambridge Quarterly of Healthcare Ethics
  • ISSN: 0963-1801
  • EISSN: 1469-2147
  • URL: /core/journals/cambridge-quarterly-of-healthcare-ethics
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