Biobanks in the literature

Ethical Issues in Governing Biobanks: Global Perspectives

Volumn , Issue , 2013, Pages 13-22

  Knoppers, Bartha Maria ^a   Abdul Rahman, Ma'n H ^a  

^a UNIVERSITÉ DE MONTRÉAL   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84938073767     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (41)

1. Andrews, L.B. (2005), “Harnessing the benefits of biobanks,” Journal of Law, Medicine and Ethics 33:1, 22–30.
2. Boyle, J. (2003), “Enclosing the Genome: What the Squabbles over Genetic Patents Could Teach Us,” https://www.law.duke.edu/boylesite/low/genome.pdf under a Creative Commons License http://www.creativecommons.org/licenses/by- sa/1.0.
3. Buchanan, A., Califano, A., Kahn J. et al. (2002), “Pharmacogenetics: Ethics and Regulatory Issues in Research and Clinical Practice. Report of the Consortium on Pharmacogenetics, Findings and Recommendations,” http://www.utexas.edu/law/faculty/jrobertson/cv_jar1.pdf, accessed 5 July 2007.
4. Chadwick, R. (2001), Informed Consent and Genetic Research (London: British Medical Journal Books).
5. Clayton, E.W. (2005), “Informed consent and biobanks,” Journal of Law, Medicine and Ethics 33:1, 15–22.
6. Clayton, E.W. Convention on Biological Diversity, signed 5 June 1992, U.N.T.S. No. 30619 (entered into force 29 December 1993).
7. Council of Europe (2006), Recommendation Rec (2006)4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin (adopted 15 March 2006).
8. Elger, B.S. and Caplan, A.L. (2006), “Consent and anonymization in research involving biobanks,” EMBO Report 7:7, 661–666.
9. Gibbons, S.M.C., Helgason, H.H., Kaye, J., Nomper, A., Wendel L. (2005), “Lessons from European population genetic databases: Comparing the law in Estonia, Iceland, Sweden and the United Kingdom,” European Journal of Health Law 12:2, 103–134.
10. Helgesson, G. and Johnsson, L. (2005), “The right to withdraw consent to research on biobank samples,” Medicine, Health Care and Philosophy 8:3, 315–321.
11. HUGO [Human Genome Organisation] Ethics Committee (2002), Statement on Human Genomic Databases, Human Genome Organisation, 1 December 2002.
12. HUGO [Human Genome Organisation] Ethics Committee (2000), Statement on Benefit-Sharing, Human Genome Organisation, 9 April 2000.
13. HUGO [Human Genome Organisation] Ethics Committee (1996), Statement on the Principled Conduct of Genetics Research, Human Genome Organisation, 31 March 1996.
14. International Conference on Harmonization of Technical Requirements for Registration of Pharmaceuticals for Human Use [ICH] (2006), “Final Concept Paper E15: Terminology in Pharmacogenomics,” endorsed by the ICH Steering Committee 19 April 2006, online http://www.ich.org/LOB/media/MEDIA3099.pdf.
15. Johnston, C. and Kaye, J. (2004), “Does the UK Biobank have a legal obligation to feedback individual findings to participants?,” Medical Law Review 12:3, 242–243.
16. Khoury, M.J. (2004), “The case for a global human genome epidemiology initiative,” Nature Genetics 36:10, 1027–1028.
17. Knoppers, B.M., Abdul-Rahman, Ma’n H. and Bedard, K. (2007), “Genomic databases and international collaboration,” KLJ 18:2, 291–311.
18. Knoppers, B.M., Joly, Y., Simard, J., Durocher, F. (2006), “The emergence of an ethical duty to disclose genetic research results: international perspectives,” European Journal of Human Genetics 14, 1170–1178.
19. Knoppers, B.M. and Chadwick, R. (1994), “Human Genome Project: Under an International Legal and Ethical Microscope,” 265 Science, 2035–2036.
20. Knoppers, B.M. and Kent, A. (2006), “Ethics watch: policy barriers in coherent population–based research,” Nature Reviews Genetics 7:1, 8.
21. Knoppers, B.M. (2005), “Consent Revisited: Points to Consider,” Health Law Review 13:2–3, 33–38.
22. Knoppers, B.M. (2005), “Biobanking: international norms,” The Journal of Law, Medicine and Ethics 33:1, 7–14.
23. Knoppers, B.M. and Chadwick, R. (2005), “Human genetic research: emerging trends in ethics,” Nature Reviews: Genetics 6:1, 75–79.
24. Knoppers, B.M. and Saginur, M. (2005), “The Babel of Genetic Data Terminology,” Nature Biotechnology 23, 925–927.
25. Le Bris, S. and Knoppers, B.M. (1997), “International and Comparative Concepts of Privacy,” in M. Rothstein (ed.), Genetic Secrets (New Haven: Yale University Press), 418–448.
26. Lipworth, W., Ankeny, R. and Kerridge, I. (2006), “Consent in crisis: the need to reconceptualize consent to tissue banking research,” Internal Medicine Journal 36:2, 124–128.
27. Lipworth, W., Ankeny, R. and Kerridge, I. Moore v. Regents of California (1990) 793 2 479 [Cal.]; cert denied (1991) 111 S. Ct. 1388.
28. Nuremberg Code, from Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10. Nuremberg, October 1946-April 1949. Washington, D.C.: U.S. G.P.O, 1949–1953.
29. Public Project in Population Genomics (P3G) n.d., http://www.p3gconsortium.org.
30. Robertson, J.A. (2003), “Ethical and Legal Issues in Genetic Biobanking,” in B.M. Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives (Leiden/Boston: Martinus Nijhoff Publishers, Netherlands), 297–309.
31. Rothstein, M. (1997), Genetic Secret (New Haven: Yale University Press).
32. Rule, J. and Hunter, L. (1999), “Towards Property Rights in Personal Data,” in C. Bennet and R. Grant (eds), Visions of Privacy (Toronto: University of Toronto Press), 168.
33. Spinello, R.A. (2004), “Property rights in genetic information,” Ethics and Information Technology 6:1, 29–42.
34. Trouet, C. (2003), “Informed consent for the research use of human biological materials,” Medicine and Law 22:3, 411–419.
35. Uranga, A.M. et al. (2005), Outstanding Legal and Ethical Issues on Biobanks: An Overview on the Regulations of Member States of the EuroBioBank Project (Madrid: Instituto de Salud Carlos 3).
36. Uranga, A.M. et al. Washington Univ. v. Catalona, United States Court of Appeals, June 2007 (No. 062286).
37. Wendler, D. (2006), “One-time general consent for research on biological samples,” BMJ 332, 544–547.
38. Wendler, D. WHO International Clinical Trials Registry Platform (2007), World Health Organization, http://www.who.int/ictrp/en/.
39. Wilfond, B.S. and Ravitsky, V. (2006), “Disclosing individual genetic results to research participants,” The American Journal of Bioethics 6:6, 8–17.
40. Williams, G. and Schroeder, D. (2004), “Human genetic banking: altruism, benefit and consent,” New Genetics and Society 23:1, 89–103.
41. World Medical Association (2000), Declaration of Helsinki, adopted by the 52nd World Medical Association General Assembly, Edinburgh, Scotland.