Can broad consent be informed consent?

Public Health Ethics

Volumn 4, Issue 3, 2011, Pages 226-235

  Sheehan, Mark ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONFIDENTIALITY; DECISION MAKING; HUMAN; INFORMATION; INFORMED CONSENT; MEDICAL ETHICS; PATIENT AUTONOMY; PRIORITY JOURNAL; PRIVACY;

EID: 80655139255     PISSN: 17549973     EISSN: 17549981     Source Type: Journal    
DOI: 10.1093/phe/phr020     Document Type: Article

References (36)

1. Allen, J. and McNamara, B. (2011). Reconsidering the Value of Consent in Biobank Researchapos. Bioethics, 25, 155-166.
2. Arnason, V. (2004). Coding and Consent: Moral Challenges of the Database Project in Iceland. Bioethics, 18, 2-49.
3. Barr, M. (2006). Iaposm not Really Read up on Genetics: Biobanks and the Social Context of Informed Consent. Biosocieties, 1, 251-262.
4. Beauchamp, T. and Childress, J. (2008). The Principles of Biomedical Ethics. 6th edn. Oxford: Oxford University Press.
5. Brekke, O. and Sirnes, T. (2006). Population Biobanks: the Ethical Gravity of Informed Consent. Biosocieties, 1, 385-398.
6. Cambon-Thomsen, A. (2004). The Social and Ethical Issues of Post-Genomic Human Biobanks. Nature Review Genetics, 5, 6-13.
7. Caulfield, T. and Weijer, C. (2009). Minimal Risk and Large-scale Biobank and Cohort Research. Health Law Review, 17, 2-3.
8. Caulfield, T., Upshur, R. E. and Daar, A. (2003). DNA Databanks and Consent: a Suggested Policy Option Involving an Authorization Model. BMC Medical Ethics, 4, E1.
9. Christensen, E. (2009). Biobanks and our Common Good. In Solbakk, J. H., Holm, S. and Hofmann, B. (eds), The Ethics of Research Biobanking. Dordrecht: Springer, pp. 101-114.
10. Edwards, S. J. L., Kirchin, S. and Huxtable, R. (2004). Research Ethics Committees and Paternalism. Journal of Medical Ethics, 30, 88-91. (Pubitemid 38262816)
11. Elster, J. (2000). Ulysses Unbound: Studies in Rationality, Precommitment, and Constraints. Cambridge: Cambridge University Press.
12. Eriksson, S. and Helgesson, G. (2005). Potential Harms, Anonymization, and the Right to Withdraw Consent to Biobank Research. European Journal of Human Genetics, 13, 1071-1076. (Pubitemid 43073615)
13. Frankfurt, H. G. (1971). Freedom of the Will and the Concept of a Person. Journal of Philosophy, 68, 5-20.
14. Foster, C. and Herring, J. (forthcoming). "Please donapost Tell me": The Right not to Know. Cambridge Quarterly of Healthcare Ethics.
15. Hansson, M., Dillner, J., Bartram, C., Carlson, J. and Helgesson, G. (2006). Should Donors be Allowed to give Broad Consent to Future Biobank Research? Lancet Oncology, 7, 266-269. (Pubitemid 43286456)
16. Harris, J. and Keywood, K. (2001). Ignorance, Information and Autonomy. Theoretical Medicine and Ethics, 22, 415-436. (Pubitemid 34036706)
17. Helgesson, G. (2008). Reply to: Bypassing Consent for Research on Biological Material. Nature Biotechnology, 26, 980-981.
18. Helgesson, G., Dillner, J., Carlson, J., Bartram, C. R. and Hansson, M. G. (2007). Ethical Framework for Previously Collected Biobank Samples. Nature Biotechnology, 25, 973-976. (Pubitemid 47517629)
19. Hoeyer, K. (2008). The Ethics of Research Biobanking: A Critical Review of the Literature. Biotechnology and Genetic Engineering Reviews, 25, 429-452.
20. Hofmann, B. (2008). Bypassing Consent for Research on Biological Material. Nature Biotechnology, 26, 979-980.
21. Hofmann, B. (2009). Broadening Consent-and Diluting Ethics? Journal of Medical Ethics, 35, 125-129.
22. Hofmann, B., Solbakk, J. H. and Holm, S. (2009). Consent to Biobank Research: One Size Fits All? In Solbakk, J. H., Holm, S. and Hofmann, B. (eds), The Ethics of Research Biobanking. Dordrecht: Springer, pp. 3-24.
23. Hoppe, N. (2011). Risky Business: Re-Evaluating Participant Risk in Biobanking. In Lenk, C., Hoppe, N., Beier, K. and Wiesemann, C. (eds), Human Tissue Research: A European Perspective on the Ethical and Legal Challenges. Oxford: Oxford University Press, pp. 35-45.
24. Hunter, K. and Laurie, G. (2009). Involving Publics in Biobank Governance: Moving Beyond Existing Approaches. In Widdows, H. and Mullen, C. (eds), The Governance of Genetic Information: Who Decides? Cambridge: Cambridge University Press, pp. 151-177.
25. Kaye, J. (2004). Broad Consent-the Only Option for Population Genetic Databases? In Arnason, G., Nordal, S. and Arnason, V. (eds), Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases. Reykjavìk: University of Iceland Press, pp. 103-109.
26. Kihlbom, U. (2008). Autonomy and Negatively Informed Consent. Journal of Medical Ethics, 34, 146-149.
27. Knoppers, B. M. (2005). Consent Revisited: Points to Consider. Health Law Review, 13, 33-38.
28. Laurie, G. (2009). Role of the UK Biobank Ethics and Governance Council. The Lancet, 374, 1676.
29. Manson, N. and OaposNeill, O. (2007). Rethinking Informed Consent in Bioethics. Cambridge: Cambridge University Press.
30. OaposNeill, O. (2002). Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press.
31. Oosterhuis, J. W., Coebergh, J. W. and van Veen, E. B. (2003). Tumour Banks: Well-Guarded Treasures in the Interest of Patients. Nature Reviews Cancer, 3, 73-77. (Pubitemid 37328889)
32. Otlowski, M. (2009). Developing an Appropriate Consent Model for Biobanks: in Defence of 'Broadapos Consent. In Kaye, J. and Stranger, M. (eds), Principles and Practice in Biobank Governance. Farnham: Ashgate, pp. 79-92.
33. Rhodes, R. (1998). Genetic Links, Family Ties and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge. Journal of Medicine and Philosophy, 23, 10-30. (Pubitemid 128670816)
34. Rothstein, M. A. (2005). Expanding the Ethical Analysis of Biobanks. Journal of Law, Medicine and Ethics, 33, 89-101. (Pubitemid 40598047)
35. Wendler, D. (2006). One-time General Consent for Research on Biological Samples. British Medical Journal, 332, 544-547. (Pubitemid 44364375)
36. Wilson, J. (1998). To Know or not to Know? Genetic Ignorance, Autonomy and Paternalism. Bioethics, 19, 492-504.