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Biobanks and Our Common Good

  • Erik Christensen

Abstract

There are many different kinds of biobanks with various scopes and purposes, such as diagnostic biobanks, therapeutic biobanks, and research biobanks. My focus is on research biobanks, which enable us to identify genetic and environmental causes of complex diseases. The hope is that research biobanks of this kind will be able to provide us with new medical knowledge of large public health issues. Research biobanks have the potential to produce knowledge that could hold great value and significance for many. In this mindset, such institutions may be considered a social asset benefiting all. I aim to explore the obligations we have in relation to research biobanks and what we can expect and demand from them. I argue that good reasons for everyone to participate in this type of research can be found in the principles and values that characterise modern societies and that many of us take for granted. To explore the rights and obligations, we have vis-à-vis biobank research. I base my arguments in a communitarian and liberalistic understanding of individuals and communities. These two approaches illustrate in separate ways what is at stake. We shall see that both approaches facilitate arguments claiming that biobank research is part of our understanding of ourselves and of society. This means that biobank research can become part of the kind of society that provides the individual with the opportunity to realise his understanding of a good life. If this is the case, we are not obligated to obtain consent from the individual in connection with biobank research. A central prerequisite is that the research promotes values and benefits we can all support. To safeguard this principle, a wider discussion and debate concerning what to research is needed. From this it follows that it could be unethical not to research certain diseases genetically.

Keywords

Good Life Common Good Social Circumstance Social Difference Natural Difference 
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.

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References

  1. Ashburn TT et al. (2000) Human tissue research in the genomic era of medicine. Archives of Internal Medicine 160:3377–3384PubMedCrossRefGoogle Scholar
  2. Austin MA et al. (2003) Monitoring ethical, legal, and social issues in developing population genetic databases. Genetics in Medicine 5:451–457PubMedCrossRefGoogle Scholar
  3. Berlin I (2002) Two concepts of liberty. In: Hardy H (Ed.) Liberty – Incorporating Four Essays on Liberty. Oxford University Press, OxfordGoogle Scholar
  4. Beskow LM et al. (2001) Informed consent for population-based research involving genetics. JAMA 286:2315–2321PubMedCrossRefGoogle Scholar
  5. Black D, Morris JN (1992) Inequalities in Health: The Black Report and the Health Divide. Penguin, LondonGoogle Scholar
  6. Cambon-Thomsen A (2004) The social and ethical issues of post-genomic human biobanks. Nature 5:866–873Google Scholar
  7. Chadwick R (2001) Informed consent and genetic research. In: Doyal L, Tobias JS (Eds.) Informed Consent in Medical Research. BMJ Books, London, pp 203–210Google Scholar
  8. Chadwick R, Berg K (2001) Solidarity and equity: new ethical frameworks for genetic databases. Nature Review Genetics 2:318–321CrossRefGoogle Scholar
  9. Cohen GA (1993) Equality of what? On welfare, goods, and capabilities. In: Nussbaum MC and Sen A (Eds.) The Quality of Life. Oxford University Press, Oxford, pp 9–29CrossRefGoogle Scholar
  10. Daniels N (1981) Health-care needs and distributive justice. Philosophy and Public Affairs 10:146–179PubMedGoogle Scholar
  11. Daniels N (1985) Just Health Care. Cambridge University Press, CambridgeCrossRefGoogle Scholar
  12. Daniels N (2008) Just Health: Meeting Health Needs Fairly. Cambridge University Press, CambridgeGoogle Scholar
  13. Daniels N (2004) Is there a right to health care and, if so, what does it encompass? In: Kuhse H, Singer P (Eds.) A Companion to Bioethics. Blackwell, Malden, MA, pp 316–325Google Scholar
  14. Daniels N et al. (1999) Why justice is good for our health: the social determinants of health inequalities. Daedalus 128:215–251PubMedGoogle Scholar
  15. Dworkin R (1977) Taking Rights Seriously. Duckworth, LondonGoogle Scholar
  16. Dworkin R (1983) In defense of equality. Social Philosophy and Policy 1:24–40CrossRefGoogle Scholar
  17. Dworkin R (1986) Law’s Empire. Harvard University Press, Cambridge, MAGoogle Scholar
  18. Dworkin R (2000) Sovereign Virtue: The Theory and Practice of Equality. Harvard University Press, Cambridge, MAGoogle Scholar
  19. Evans HM (2004) Should patients be allowed to veto their participation in clinical research? Journal of Medical Ethics 30:198–203PubMedCrossRefGoogle Scholar
  20. Godard B et al. (2004) Strategies for consulting with the community: the cases of four large-scale genetic databases. Science and Engineering Ethics 10:457–477PubMedCrossRefGoogle Scholar
  21. Gottweis H, Petersen AR (2008) Biobanks: Governance in Comparative Perspective. Routledge, Abingdon, OxonGoogle Scholar
  22. Hansson MO (1998) Balancing the quality of consent. Journal of Medical Ethics 24:182–187PubMedCrossRefGoogle Scholar
  23. Hansson MG et al. (2006) Should donors be allowed to give broad consent to future biobank research? Lancet Oncology 7:266–269PubMedCrossRefGoogle Scholar
  24. Hansson MG, Levin M (Eds.) (2003) Biobanks as Resources for Health. Uppsala Universitet, UppsalaGoogle Scholar
  25. Harris J (2005) Scientific research is a moral duty. Journal of Medical Ethics 31:242–248PubMedCrossRefGoogle Scholar
  26. Harris J, Woods S (2001) Rights and responsibility of individual participating in medical research. In: Doyal L, Tobias JS (Eds.) Informed Consent in Medical Research. BMJ Books, London, pp 276–282Google Scholar
  27. Hä yry M et al. (Eds.) (2007) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge University Press, CambridgeGoogle Scholar
  28. Helgesson G, Eriksson S (2008) Against the principle that the individual shall have priority over science. Journal of Medical Ethics 34:54–56PubMedCrossRefGoogle Scholar
  29. Herrera CD (2003) Universal compulsory service in medical research. Theoretical Medicine 24:215–231CrossRefGoogle Scholar
  30. Hoedemaekers R et al. (2007) Solidarity and justice as guiding principles in genomic research. Bioethics 21:342–350PubMedCrossRefGoogle Scholar
  31. Holmen J et al. (2003) The Nord-Trøndelag Health Study 1995–97 (HUNT 2): objectives, contents, methods and participation. Norsk Epidemiologi 13:19–32Google Scholar
  32. Kaye J (2004) Abandoning informed consent. In: Tutton R and Corrigan O (Eds.) Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. Routledge, London, pp 117–138Google Scholar
  33. Knoppers BM, Chadwick R (2005) Science and society – human genetic research: emerging trends in ethics. Nature Reviews Genetics 6:75–79PubMedCrossRefGoogle Scholar
  34. Kymlicka W (2002) Contemporary Political Philosophy. Oxford University Press, OxfordGoogle Scholar
  35. Mackenbach JP et al. (2008) Socioeconomic inequalities in health in 22 European countries. New England Journal of Medicine 358:2468–2481PubMedCrossRefGoogle Scholar
  36. Marchand S et al. (1998) Class, health, and justice. Milbank Quarterly 76:449–467PubMedCrossRefGoogle Scholar
  37. Marmot MG (2004) Social causes of social inequalities in health. In: Anand S, Peter F, Sen A (Eds.) Public Health, Ethics, and Equity. Oxford University Press, Oxford, pp 37–61Google Scholar
  38. Marmot MG et al. (1978) Employment grade and coronary heart disease in British civil servants. Journal of Epidemiology and Community Health 32:244–299PubMedCrossRefGoogle Scholar
  39. Mill JS (1859/2004) On Liberty and Other Writings. Cambridge University Press, CambridgeGoogle Scholar
  40. Orentlicher D (2005) Making research a requirement of treatment: why we should sometimes let doctors pressure patients to participate in research. Hastings Center Report 35:20–28PubMedCrossRefGoogle Scholar
  41. Pogge TW (1989) Realizing Rawls. Cornell University Press, IthacaGoogle Scholar
  42. Rawls J (1999) A Theory of Justice, revised edition. Oxford University Press, OxfordGoogle Scholar
  43. Rawls J (2001) Justice as Fairness: A Restatement. Kelly E (Ed.). Harvard University Press, Cambridge, MAGoogle Scholar
  44. Rawls J (2005) Political Liberalism. Columbia University Press, New YorkGoogle Scholar
  45. Rhodes R (2005) Rethinking research ethics. American Journal of Bioethics 5:7–28PubMedCrossRefGoogle Scholar
  46. Rhodes R (2008) In defense of the duty to participate in biomedical research. American Journal of Bioethics 8:37–44PubMedGoogle Scholar
  47. Sandel MJ (1998) Liberalism and the Limits of Justice, 2nd edn. Cambridge University Press, CambridgeCrossRefGoogle Scholar
  48. Sen A (1992) Inequality Reexamined. Clarendon Press, OxfordGoogle Scholar
  49. Sen A (2004) Why health equity? In: Anand S, Peter F, Sen A (Eds.) Public Health, Ethics, and Equity. Oxford University Press, Oxford, pp 21–33Google Scholar
  50. Shapiro D (2007) Is the Welfare State Justified? Cambridge University Press, New YorkCrossRefGoogle Scholar
  51. Sutrop M (Ed.) (2004) Human genetic databases: ethical, legal and social issues (special issue). TRAMES 8(1/2)Google Scholar
  52. Taylor C (1985a) What is human agency? In: Taylor C (Ed.) Philosophical Papers I. Cambridge University Press, Cambridge, pp 15–44Google Scholar
  53. Taylor C (1985b) Atomism. In: Taylor C (Ed.) Philosophical Papers II. Cambridge University Press, Cambridge, pp 187–210Google Scholar
  54. Taylor C (1985c) What’s wrong with negative liberty. In: Taylor C (Ed.) Philosophical Papers II. Cambridge University Press, Cambridge, pp 211–229Google Scholar
  55. Taylor C (1998) Sources of the Self. Cambridge University Press, CambridgeGoogle Scholar
  56. Tutton R, Corrigan O (Eds.) (2004) Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. Routledge, LondonGoogle Scholar
  57. Weldon S (2004) Public consent or scientific citizenship. In: Tutton R, Corrigan O (Eds.) Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. Routledge, LondonGoogle Scholar
  58. Wendler D (2002) What research with stored samples teaches us about research with human subjects. Bioethics 16:33–54PubMedCrossRefGoogle Scholar
  59. Wikler D (2004) Personal and social responsibility for health. In: Sudhir A, Fabienne P, Sen A (Eds.) Public Health, Ethics, and Equity. Oxford University Press, Oxford, pp 109–134Google Scholar
  60. Williams G (2005) Bioethics and large-scale biobanking: individualistic ethics and collective projects. Genomics, Society and Policy 1:50–66CrossRefGoogle Scholar
  61. Williams G, Schroeder D (2004) Human genetic banking: altruism, benefit and consent. New Genetics and Society 23:89–103PubMedCrossRefGoogle Scholar
  62. Winickoff DE, Winickoff RN (2003) The charitable trust as model for genomics biobanks. New England Journal of Medicine 349:1180–1184PubMedCrossRefGoogle Scholar
  63. World Health Organization (2003) Genetic Databases: Assessing the Benefits and the Impact on Human and Patient Rights. WHO, GenevaGoogle Scholar

Copyright information

© Springer Science + Business Media, LLC 2009

Authors and Affiliations

  • Erik Christensen
    • 1
  1. 1.Department of Philosophy and Bioethics Research GroupNorwegian University of Science and TechnologyTrondheimNorway

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