Biobanking: Social, Political and Ethical Aspects


Prospective, population‐based biobanks designed for research into genetic, environmental and lifestyle factors associated with common, complex diseases or the genetic basis of drug response have garnered significant interest over the past 10 years from bioethicists, social scientists, lawyers and other commentators. There are a series of interrelated but distinct social, political and ethical issues raised by biobanking: the challenges of creating governance structures that win public confidence in these novel and uncertain scientific initiatives; the establishment of appropriate systems of consent; determining the rights of ownership, commercial exploitation and benefit‐sharing among different stakeholders and the ways biobanks invoke ideas about human population differences and might serve to help address the health needs of minority groups in society.

Key concepts:

  • Biobanking is an activity that spans research and clinical contexts and is undertaken by public sector agencies, charities and commercial actors.

  • Biobanks should be understood as ‘sociotechnical’ enterprises that need to bring about novel arrangements for governance, gain the support of funders and the public, as well to develop scientific and technical procedures and infrastructures.

  • Biobanks are situated on the blurred lines of ‘public’ and ‘private’ and raise significant, controversial issues about the role of commercial interests in biomedical research and the distribution of benefits from the use of human tissue and information on individuals.

  • With the prospect of international networking of biobanks, questions of data sharing, consent, privacy and governance will remain significant and still need to be further debated and resolved.

Keywords: biobanks; genetic databases; consent; commercialization; governance


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): 533–553.

Arnason E (2003) Genetic heterogeneity of Icelanders. Annals of Human Genetics 67: 5–16.

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): 59–68.

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): 2315–2321.

Boyle J (1992) A theory of law and information: copyright, spleens, Blackmail and insider trading. California Law Review 80(6): 1415–1540.

Brown N and Kraft A (2006) Blood ties: banking the stem cell promise. Technology Analysis & Strategic Management 18(3): 313–327.

Busby H (2006) Biobanks, bioethics and concepts of donated blood. Sociology of Health and Illness 28(6): 850–865.

Busby H and Martin P (2006) Biobanks, national identity and imagined communities: the case of UK Biobank. Science as Culture 15(3): 237–251.

Chadwick R (2003) Genomics, public health and identity. Acta Bioethica 9(2): 209–218.

Chadwick R and Berg K (2001) Solidarity and equity: new ethical frameworks for genetic databases. Nature Reviews. Genetics 2: 318–321.

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): 652–655.

Clayton EW (2005) Informed consent and biobanks. Journal of Law, Medicine and Ethics 33(1): 15–21.

Collins F (2004) The case for a US prospective cohort study of genes and environment. Nature 429: 475–477.

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. 302–317. 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): 57–80.

Elger BS and Caplan AL (2006) Consent and anonymization in research involving biobanks. EMBO Reports 7(7): 661–666.

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): 163–189.

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): 457–478.

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): 272–282.

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: 429–452.

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: 744–746.

Knoppers BM (2005) Biobanking: international norms. Journal of Law, Medicine and Ethics 33(1): 7–14.

Knoppers BM and Laberge C (1995) Research and stored tissue: persons as sources, samples as persons? JAMA 274(22): 1806–1807.

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: 124–128.

Lunshof J, Chadwick R, Vorhaus D and Church G (2008) From genetic privacy to open consent. Nature Reviews. Genetics 9: 406–411.

Martin P (2001) Genetic governance: the risks, oversight and regulation of genetic databases in the UK. New Genetics and Society 20(2): 157–184.

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): 1201–1209.

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): 271–292.

Petersen A (2007) ‘Biobanks’ “engagements”: engendering trust or engineering consent? Genomics, Society and Policy 3(1): 31–43.

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): 184–189.

Royal CDM and Dunston GM (2004) Changing the paradigm from ‘race’ to human genome variation. Nature Genetics 36(suppl. 11): S5–S7.

Salter B and Jones M (2005) Biobanks and bioethics: the politics of legimitation. European Journal of Public Policy 12(2): 710–732.

Sebire NJ and Dixon‐Woods M (2007) Towards a new era of tissue‐based diagnosis and research. Chronic Illness 3(4) (December 1) 301–309.

Shickle D (2006) The consent problem within DNA biobanks. Studies in History and Philosophy of Biology and Biomedical Sciences 37: 503–519.

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): 29–40.

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): 169–190.

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): 33–49.

Tutton R (2008) Biobanks and the biopolitics of inclusion and representation. In: Gottweis H and Peterson A (eds) Biobanks: Governance in Comparative Perspective, pp. 159–176. 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): 1–26.

Wilson S (2004) Population biobanks and social justice: commercial or communitarian models? Trames 8(1/2): 80–89.

Winickoff DE (2007) Partnership in UK Biobank: a third way for genomic property. Journal of Law, Medicine and Ethics 35(3): 440–445.

Winickoff DE and Winickoff RN (2003) The charitable trust as a model for genomic biobanks. New England Journal of Medicine 349(12): 1180–1184, September 18.

Contact Editor close
Submit a note to the editor about this article by filling in the form below.

* Required Field

How to Cite close
Tutton, Richard(Jan 2010) Biobanking: Social, Political and Ethical Aspects. In: eLS. John Wiley & Sons Ltd, Chichester. [doi: 10.1002/9780470015902.a0022083]