• Darren Shickle
Reference work entry


This chapter applies the principles contained within the Universal Declaration on Bioethics and Human Rights to ethics and governance issues arising in the context of biobanks. Biobanks are structured resources that can be used for the purpose of genetic research, which include (a) human biological materials and/or information generated from the analysis of the same and (b) extensive associated information. For the purpose of this chapter, the principles are discussed within the following groupings:
  • Human dignity, equity, and respect for cultural diversity: Articles 3, 8, 10, 11, 12, and 17

  • Autonomy and consent: Articles 5, 6, 7, and 9

  • Solidarity and cooperation: Articles 4, 12, 14, and 16

  • Sharing of benefits: Article 15

While the particular issues relating to biobanks require specific attention, this should not mean that the principles within the Universal Declaration on Bioethics and Human Rights do not apply. Thus, “biobank exceptionalism” claims for waiving requirements to obtain informed consent to sharing of intellectual property rights should be challenged.


Genetic Research Human Dignity Mental Capacity Intellectual Property Right Universal Declaration 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


  1. Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics (5th ed.). New York: Oxford University Press.Google Scholar
  2. Cavalli-Sforza, L. L. (2005). The Human Genome Diversity Project: past, present and future. Nature Reviews Genetics, 6, 333–340.Google Scholar
  3. Council of Europe. (2006). Recommendation Rec(2006)4 of the Committee of Ministers to Member States on research on biological materials of human origin. Retrieved from Accessed 26 October 2012.
  4. El Setouhy, M., Agbenyega, T., Anto, F., Clerk, C. A., Koram, K. A., English, M., et al. (2004). Moral standards for research in developing countries from “Reasonable Availability” to “Fair Benefits”. The Hastings Center Report, 34(3), 17–27.CrossRefGoogle Scholar
  5. Emerson, C. I., Singer, P. A., & Upshur, R. E. G. (2011). Access and use of human tissues from the developing world: Ethical challenges and a way forward using a tissue trust. BMC Medical Ethics, 12, 2.CrossRefGoogle Scholar
  6. Greely, H. T. (2000). Iceland’s plan for genomics research; Facts and implications. Jurimetrics, 40(2), 153–191.Google Scholar
  7. Greely, H. T. (2001). Human genome diversity: What about the other human genome project? Nature Reviews Genetics, 2, 222–227.CrossRefGoogle Scholar
  8. Hoeyer, K. (2008). The ethics of research biobanking: A critical review of the literature. Biotechnology and Genetic Engineering Review, 25, 429–452.CrossRefGoogle Scholar
  9. Human Genetic Commission. (2002). Inside information: Balancing interests in the use of personal genetic data. A summary report by the Human Genetics Commission. London: HGC.Google Scholar
  10. Human Genome Organisation. (1996). Statement on the principled conduct of genetics research. Retrieved from Accessed 26 October 2012.
  11. Human Genome Organisation Ethics Committee. (2000). Statement on benefit-sharing. Retrieved from Accessed 26 October 2012.
  12. Johnsson, L., Hansson, M. G., Eriksson, S., & Helgesson, G. (2008). Patients’ refusal to consent to storage and use of samples in Swedish biobanks: Cross sectional study. BMJ, 337, a345. doi:10.1136/bmj.a345.CrossRefGoogle Scholar
  13. Kaufman, D. J., Murphy-Bollinger, J., Scott, J., & Hudson, K. L. (2009). Public opinion about the importance of privacy in biobank research. American Journal of Human Genetics, 85, 643–654.CrossRefGoogle Scholar
  14. Laurie, G. (2008). Evidence of support for biobanking practices. BMJ, 337, a337. doi:10.1136/bmj.a337.CrossRefGoogle Scholar
  15. Ludman, E. J., Fullerton, S. M., Spangler, L., Trinidad, S. B., Fujii, M. M., Jarvik, P., et al. (2010). Glad you asked: Participants’ opinions of re-consent for dbGaP data submission. Journal of Empirical Research on Human Research Ethics, 5(3), 9–16.CrossRefGoogle Scholar
  16. Marsh, R. (2010). The defendants. Gene Watch, 5–6, 12–13.Google Scholar
  17. McGuire, A. L., Fisher, R., Cusenza, P., Hudson, K., Rothstein, M. A., McGraw, D., et al. (2008). Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: Points to consider. Genetics in Medicine, 10(7), 495–499.CrossRefGoogle Scholar
  18. Melas, P. A., Sjöholm, L. K., Forsner, T., Edhborg, M., Juth, N., Forsell, Y., et al. (2010). Examining the public refusal to consent to DNA biobanking: Empirical data from a Swedish population-based study. Journal of Medical Ethics, 36, 93–98.CrossRefGoogle Scholar
  19. National Institutes of Health. (2005). Best practices for the licensing of genomic inventions. Federal Register, 70(68), 18413–18415. Retrieved from Accessed 26 October 2012.
  20. Organisation for Economic Co-Operation and Development. (2006). Guidelines for the licensing of genetic inventions. OECD: Paris. Retrieved from Accessed 26 October 2012.
  21. Organisation for Economic Co-operation and Development. (2009). Guidelines for human biobanks and genetic research databases. Paris: OECD. Retrieved from Accessed 26 October 2012.
  22. Park, S. (2010). The plaintiffs. Gene Watch, 5–6, 10–11.Google Scholar
  23. Pathmasiri, S., Deschênes, M., Joly, T., Hemmings, F., & Knoppers, B. M. (2011). Intellectual property rights in publicly funded biobanks: Much ado about nothing? Nature Biotechnology, 29(4), 319–323.CrossRefGoogle Scholar
  24. Petersen, A. (2005). Securing our genetic health: Engendering trust in UK Biobank. Sociology of Health & Illness, 27(2), 271–292.CrossRefGoogle Scholar
  25. Secretariat of the Convention on Biological Diversity. (2002). Bonn guidelines on access to genetic resources and fair and equitable sharing of the benefits arising out of their utilization. Montreal: Convention on Biological Diversity. Retrieved from Accessed 26 October 2012.
  26. Sheremeta, L., & Knoppers, B. M. (2007). Beyond the rhetoric; Population genetics and benefit-sharing. In P. W. B. Philips & C. B. Onwuekwe (Eds.), Accessing and Sharing the Genomics Revolution (pp. 157–182). Dordrecht: Springer.CrossRefGoogle Scholar
  27. Shickle, D. (2006a). The Mental Capacity Act 2005. Clinical Medicine, 6(2), 169–173.CrossRefGoogle Scholar
  28. Shickle, D. (2006b). The consent problem within DNA biobanks. Studies in History and Philosophy of Biological and Biomedical Sciences, 37, 503–519.CrossRefGoogle Scholar
  29. Shickle, D., Griffin, M., & El-Arifi, K. (2010). Inter- and intra- biobank networks: Classification of biobank. Pathobiology, 77(4), 181–190.CrossRefGoogle Scholar
  30. Shickle, D., Hapgood, R., Carlisle, J., Shackley, P., Morgan, A., & McCabe, C. (2003). Public attitudes to participating in UK Biobank: A DNA bank, lifestyle and morbidity database on 500,000 members of the UK public aged 45–69. In B. M. Knoppers (Ed.), Populations and genetics: Legal and socio-ethical perspectives (pp. 323–342). Leiden: Martinus Nijhoff.Google Scholar
  31. Terry, S. F. (2003). Learning genetics. Health Affairs, 22(5), 166–171.CrossRefGoogle Scholar
  32. Terry, S. (2010). Why banning patents would hurt patients. Gene Watch, 5–6, 24–25.Google Scholar
  33. UK Biobank. (2003). Notes of UK Biobank consultation with industry workshop held on 4 April 2003 at ABPI Head Office, 12 Whitehall, London, UK, SW1A 2DY. London: UK Biobank. Retrieved from Accessed 26 October 2012.
  34. UK Biobank. (2007). UK Biobank ethics and governance framework. Version 3.0. London: UK Biobank. Retrieved from Accessed 26 October 2012.
  35. UK Biobank. (2011). ACCESS PROCEDURES: Application and review procedures for access to the UK Biobank resource. London: UK Biobank. Retrieved from Accessed 26 October 2012.

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  1. 1.Academic Unit of Public HealthLeeds Institute of Health Sciences, University of LeedsLeedsUK

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