Standard Article

You have free access to this content

Biobanking: Social, Political and Ethical Aspects

  1. Richard Tutton

Published Online: 15 JAN 2010

DOI: 10.1002/9780470015902.a0022083



How to Cite

Tutton, R. 2010. Biobanking: Social, Political and Ethical Aspects. eLS. .

Author Information

  1. Lancaster University, ESRC Centre for Economic and Social Aspects of Genomics (Cesagen), Lancaster, UK

Publication History

  1. Published Online: 15 JAN 2010


  1. References
  • Abbott A (2001) Hopes of biotech interest spur Latvian population genetics. Nature 412(6846): 468.
  • Andrews L and Nelkin D (2002) Body Bazaar: The Market for Human Tissue in the Biotechnology Age. New York: Crown Publications.
  • Arnason A and Simpson B (2003) Refractions through culture: the new genomics in Iceland. Ethnos 68(4): 533553.
  • Arnason E (2003) Genetic heterogeneity of Icelanders. Annals of Human Genetics 67: 516.
  • Arnason G, Nordal S and Arnason V (eds) (2004) Blood and Data: Ethical, Legal and Social Aspects of Human Genetic Databases. Reykjavík: Haskolautgafan.
  • Berg K (2001) DNA sampling and banking in clinical genetics and genetic research. New Genetics and Society 20(1): 5968.
  • Beskow LM, Burke W, Merz J et al. (2001) Informed consent for population-based research involving genetics. Journal of the American Medical Association 286(18): 23152321.
  • Boyle J (1992) A theory of law and information: copyright, spleens, Blackmail and insider trading. California Law Review 80(6): 14151540.
  • Brown N and Kraft A (2006) Blood ties: banking the stem cell promise. Technology Analysis & Strategic Management 18(3): 313327.
  • Busby H (2006) Biobanks, bioethics and concepts of donated blood. Sociology of Health and Illness 28(6): 850865.
  • Busby H and Martin P (2006) Biobanks, national identity and imagined communities: the case of UK Biobank. Science as Culture 15(3): 237251.
  • Chadwick R (2003) Genomics, public health and identity. Acta Bioethica 9(2): 209218.
  • Chadwick R and Berg K (2001) Solidarity and equity: new ethical frameworks for genetic databases. Nature Reviews. Genetics 2: 318321.
  • Chen DT, Rosenstein DL, Muthappan P et al. (2005) Research with stored biological samples: what do research participants want? Archives of Internal Medicine 165(6): 652655.
  • Clayton EW (2005) Informed consent and biobanks. Journal of Law, Medicine and Ethics 33(1): 1521.
  • Collins F (2004) The case for a US prospective cohort study of genes and environment. Nature 429: 475477.
  • Cooper M (2008) Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era. Seattle: University of Washington Press.
  • Corrigan O and Tutton R (2009) Biobanks and the challenges of governance, legitimacy and benefit. In: Atkinson P, Glasner P and Lock M (eds) Handbook of Genetics & Society: Mapping the New Genomic Era, pp. 302317. London: Routledge.
  • Dabrock P, Taupitz J and Ried J (ed.) (2010) Trust in Biobanking: Dealing with Ethical, Legal and Social Issues in an Emerging Field of Biotechnology. London: Springer.
  • Dixon-Woods M, Wilson D, Jackson C, Cavers D and Pritchard-Jones K (2008) Human tissue and ‘the public’: the case of childhood cancer tumour banking. BioSocieties 3(01): 5780.
  • Elger BS and Caplan AL (2006) Consent and anonymization in research involving biobanks. EMBO Reports 7(7): 661666.
  • Epstein S (2007) Inclusion: The Politics of Difference in Medical Research. Chicago: Chicago University Press.
  • Eriksson S and Hansson MG (eds) (2001) The Use of Human Biobanks – Ethical, Social, Economical and Legal Aspects. Uppsala, Sweden: Uppsala University Press.
  • Faulkner-Sleebom M (2008) Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. London: Routledge.
  • Fortun M (2008) Promising Genomics: Iceland and deCODE Genetics in a World of Speculation. Berkeley: University of California Press.
  • Gibbons SM, Kaye J, Smart A, Heeney C and Parker M (2007) Governing genetic databases: challenges facing research regulation and practice. Journal of Law and Society 24(2): 163189.
  • Godard B, Marshall J, Laberge C and Knoppers BM (2004) Strategies for consulting with the community: the cases of four large scale genetic databases. Science and Engineering Ethics 10(3): 457478.
  • Gottweis H and Petersen A (eds) (2008) Biobanks: Governance in Comparative Perspective. London: Routledge.
  • Grubb A (1998) “I, me, mine”: bodies, parts and property. Medical Law International 3(299): 317.
  • Haddow G, Laurie G, Cunningham-Burley S and Hunter Kathryn G (2007) Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal. Social Science & Medicine 64(2): 272282.
  • Häyry M, Chadwick R, Árnason V and Árnason G (eds) (2007) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge, NY: University of Cambridge Press.
  • Hoeyer K (2008) The ethics of research biobanking: a critical review of the literature. Biotechnology and Genetic Engineering Ethics 25: 429452.
  • Holmlund G, Lodestad I, Nilsson H and Lindblom B (2006) Experiences from DNA analysis in Sweden for the identification of tsunami victims. International Congress Series 1288: 744746.
  • Knoppers BM (2005) Biobanking: international norms. Journal of Law, Medicine and Ethics 33(1): 714.
  • Knoppers BM and Laberge C (1995) Research and stored tissue: persons as sources, samples as persons? JAMA 274(22): 18061807.
  • Laurie G (2002) Genetic Privacy: A Challenge to Medico-Legal Norms. Cambridge, NY: Cambridge University Press.
  • Lipworth W, Ankeny R and Kerridge I (2006) Consent in crisis: the need to reconceptualise consent to tissue banking research. Internal Medicine Journal 36: 124128.
  • Lunshof J, Chadwick R, Vorhaus D and Church G (2008) From genetic privacy to open consent. Nature Reviews. Genetics 9: 406411.
  • Martin P (2001) Genetic governance: the risks, oversight and regulation of genetic databases in the UK. New Genetics and Society 20(2): 157184.
  • McNamara B and Petersen A (2008) Framing consent: the politics of “engagement” in an Australian biobank project. In: Gottweis H and Peterson A (eds) Biobanks: Governance in Comparative Perspective. London: Routledge.
  • Merz J, McGee GE and Sankar P (2004) ‘Iceland Inc’? On the ethics of commercial population genetics. Social Science and Medicine 58(6): 12011209.
  • Mieszkowski K (2003) Economic success is in the genes. Guardian. period London.
  • Nuffield Council on Bioethics (1995) Human Tissue: Ethical and Legal Issues. London: Nuffield Council on Bioethics.
  • Palsson G (2008) Anthropology and the New Genetics. Cambridge, NY: Cambridge University Press.
  • Petersen A (2006) Securing our genetic health: engendering trust in UK Biobank. Sociology of Health and Illness 27(2): 271292.
  • Petersen A (2007) ‘Biobanks’ “engagements”: engendering trust or engineering consent? Genomics, Society and Policy 3(1): 3143.
  • Prainsack B (2008) Governing through biobanks: research populations in Israel. In: Gottweis H and Peterson A (eds) Biobanks: Governance in Comparative Perspective. London: Routledge.
  • Rose H (2001) The Commodification of Bioinformation: The Icelandic Health Sector Database. London: Wellcome Trust.
  • Rose H (2006) From hype to mothballs in four years: troubles in the development of large-scale DNA biobanks in Europe. Community Genetics 9(3): 184189.
  • Royal CDM and Dunston GM (2004) Changing the paradigm from ‘race’ to human genome variation. Nature Genetics 36(suppl. 11): S5S7.
  • Salter B and Jones M (2005) Biobanks and bioethics: the politics of legimitation. European Journal of Public Policy 12(2): 710732.
  • Sebire NJ and Dixon-Woods M (2007) Towards a new era of tissue-based diagnosis and research. Chronic Illness 3(4) (December 1) 301309.
  • Shickle D (2006) The consent problem within DNA biobanks. Studies in History and Philosophy of Biology and Biomedical Sciences 37: 503519.
  • Shickle D, Hapgood R, McCabe C and Shackley P (2002) ‘Public attitudes to participating in BioBank UK: A DNA bank, lifestyle and morbidity database of 500 000 members of the UK public aged 45-65’. Paper presented at 3rd International DNA Sampling Conference, Montreal, Quebec, Canada.
  • Simm K (2005) Benefit-sharing: an inquiry regarding the meaning and limits of the concept in human genetic research. Genomics, Society and Policy 1(2): 2940.
  • Smart A, Tutton R, Ashcroft R et al. (2008) Social inclusivity versus analytical acuity? A qualitative study of UK researchers regarding the inclusion of minority racial/ethnic groups in biobanks. Medical Law International 9(2): 169190.
  • Triendl R and Gottweis H (2008) Governance by stealth: large-scale pharmacogenomics and biobanking in Japan. In: Gottweis H and Peterson A (eds) Biobanks: Governance in Comparative Perspective. London: Routledge.
  • Tupasela A (2006) Locating tissue collections in tissue economies – deriving value from biomedical research. New Genetics and Society 25(1): 3349.
  • Tutton R (2008) Biobanks and the biopolitics of inclusion and representation. In: Gottweis H and Peterson A (eds) Biobanks: Governance in Comparative Perspective, pp. 159176. London: Routledge.
  • Tutton R and Corrigan O (eds) (2004) Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA. London: Routledge.
  • Waldby S and Mitchell R (2006) Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism. London: Duke University Press.
  • Walmsley H (2009) Mad scientists bend the frame of biobank governance in British Columbia. Journal of Public Deliberation 5(1): 126.
  • Wilson S (2004) Population biobanks and social justice: commercial or communitarian models? Trames 8(1/2): 8089.
  • Winickoff DE (2007) Partnership in UK Biobank: a third way for genomic property. Journal of Law, Medicine and Ethics 35(3): 440445.
  • Winickoff DE and Winickoff RN (2003) The charitable trust as a model for genomic biobanks. New England Journal of Medicine 349(12): 11801184, September 18.