Article contents
In Defense of Broad Consent
Published online by Cambridge University Press: 13 December 2011
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.
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- Special Section: Open Forum
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- Copyright © Cambridge University Press 2011
References
1. Beauchamp, T, Childress, R.Principles of Biomedical Ethics, 6th ed.New York: Oxford University Press; 2009.Google Scholar
2. Elger, BS, Caplan, AL.Consent and anonymization in research involving biobanks. EMBO Reports 2006;7:661–6.CrossRefGoogle ScholarPubMed
3. Knoppers, BM.Biobanking: International norms. Journal of Law, Medicine & Ethics 2005;33:7–14.CrossRefGoogle ScholarPubMed
4. Maschke, KJ.Navigating an ethical patchwork—human gene banks. Nature Biotechnology 2005;23(5):539–45.CrossRefGoogle ScholarPubMed
5. Van Veen, BE.Human tissue bank regulations. Nature Biotechnology 2006;24(5):496–7.CrossRefGoogle ScholarPubMed
6. Árnason, V.Coding and consent: Moral challenges of the database project in Iceland. Bioethics 2004; 18:27–49.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.Google Scholar
9. Hofmann, B.Broadening consent—and diluting ethics? Journal of Medical Ethics 2009;35:125–9.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
11. Haga, SB, Beskow, LM.Ethical, legal, and social implications of biobanks for genetic research. Advances in Genetics 2008;60:505–44.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
14. See note 1, Beauchamp, Childress 2009.
15. Faden, R, Beauchamp, T.A History and Theory of Informed Consent. Oxford: Oxford University Press; 1986.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
26. See note 1, Beauchamp, Childress 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.CrossRefGoogle Scholar
30. Harmon, A.Indian tribe wins fight to limit research of its DNA. The New York Times 2010 Apr 21.Google Scholar
31. Harmon, A.Havasupai case highlights risks in DNA research. The New York Times 2010 Apr 22.Google Scholar
32. Harmon, A.Where’d you go with my DNA? The New York Times 2010 Apr 24.Google Scholar
34. Rubin, P.Havasupai tribe win nice settlement from ASU in scandalous blood-sample case. Phoenix New Times 2010 Apr 22.Google Scholar
35. Hofmann, BM.Bypassing consent for research on biological material. Nature Biotechnology 2008;26(9):979–80.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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