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Human Tissue and ‘the Public’: The Case of Childhood Cancer Tumour Banking

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Abstract

Currently influential accounts of research use of human tissue depict biomedical science as operating in opposition to the norms and values of ‘the public’. Using historical analysis and empirical data from a qualitative study of 79 family members of a child with cancer, this article challenges such accounts of ‘the public’. Families of a child with cancer generally reported that they considered themselves to be members of a community united by a sense of common purpose, in which values and interests are shared and members of the community are to be trusted. The value of tissue for patients and families lay not so much in the way it embodied some essence of the self, as in the way it embedded them within the childhood cancer community. Historical analysis demonstrates that science and its broader ‘public’ are interdependent, mutually constitutive components of a culture, interacting and exchanging rhetoric and imagery relating to research and research materials, as well as the material itself. Rather than separate social worlds of ‘bioscience’ and ‘the public’, our evidence suggests that the childhood cancer community, in respect of the area of tissue banking for research, is much better conceived of as a hybrid. Understanding ‘the public’ and ‘science’ as a multiplicities helps clarify the existence of often competing views of tissue use.

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References

  • Ablett S., Doz F., & Morland B. New Agents Group of the UK Children's Cancer Study Group (UKCCSG) and Pharmacology Group of the French Society of Paediatric Oncology (SFOP). (2004). European collaboration in trials of new agents for children with cancer. European Journal of Cancer, 40, 1886–1892.

    Article  Google Scholar 

  • Andrews L., & Nelkin D. (2000). Body bazaar: The market for human tissue in the biotechnology age. New York: Crown Publishers.

    Google Scholar 

  • Andrews L.B. (1986). My body, my property. Hastings Center Report, 16, 28–38.

    Article  Google Scholar 

  • Anon (1987). Human tissue as alternative in biomedical research. Alternatives to Laboratory Animals, 14, 375–385.

  • Appadurai A. (1986). Introduction: Commodities and the politics of value, 3–63. In The social life of things: Commodities in cultural perspective. Cambridge: Cambridge UP.

    Book  Google Scholar 

  • Barr M. (2006). ‘I'm not really read up on genetics’: Biobanks and the social context of informed consent. BioSocieties, 1, 251–262.

    Article  Google Scholar 

  • Bauer M.W. (2005). Public perceptions and the mass media in the biotechnology controversy. International Journal of Public Opinion Research, 17, 4–22.

    Google Scholar 

  • Bauer M.W., & Gaskell G. (1999). Toward a paradigm for research on social representations. Journal for the Theory of Social Behaviour, 29, 163–186.

    Article  Google Scholar 

  • Belkin G.S. (2004). Moving beyond bioethics: History and the search for medical humanism. Perspectives in Biology and Medicine, 47, 372–385.

    Article  Google Scholar 

  • Binmore K. (2006). The origins of fair play. Jena, Germany: Max Planck Institute of Economics, Evolutionary Economics Group.

    Google Scholar 

  • Bowker G.C., & Star S.L. (1999). Sorting things out: Classification and its consequences. Cambridge, MA: MIT Press.

    Google Scholar 

  • Busby H. (2004). Blood donation for genetic research. In Tutton R. & Corrigan O. (Eds), Genetic database: Socio-ethical issues in the collection and use of DNA. London: Routledge.

    Google Scholar 

  • Busby H. (2006). Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health & Illness, 28, 850–865.

    Article  Google Scholar 

  • Clarke A., & Montini T. (1993). The many faces of RU486: Tales of situated knowledges and technological contestations. Science, Technology and Human Values, 18, 42–78.

    Article  Google Scholar 

  • Crichton M. (2006). Next. London: HarperCollins.

    Google Scholar 

  • Dewar S., & Boddington P. (2004). Returning to the Alder Hey report and its reporting: Addressing confusions and improving inquiries. Journal of Medical Ethics, 30, 463–469.

    Article  Google Scholar 

  • Dickenson D. (2004). Consent, commodification and benefit-sharing in genetic research. Developing World Bioethics, 4, 109–124.

    Article  Google Scholar 

  • Dixon-Woods M., Young B., & Ross E. (2006). Researching chronic childhood illness: The example of childhood cancer. Chronic Illness, 2, 165–177.

    Article  Google Scholar 

  • Dixon-Woods M., Ashcroft R.E., Jackson C.J., Tobin M.D., Kivits J., Burton P.R. et al. (2007). Beyond ‘misunderstanding’: Written information and decisions about participating in a genetic epidemiology study. Social Science & Medicine, 65, 2212–2222.

    Article  Google Scholar 

  • Docherty S., & Sandelowski M. (1999). Interviewing children. Research in Nursing and Health, 22, 177–185.

    Article  Google Scholar 

  • Durbach N. (2005). Bodily matters: The anti-vaccination movement in England, 1853—1907. Durham, NC: Duke UP.

    Google Scholar 

  • Einsiedel E. (2007). Editorial: Of publics and science. Public Understanding of Science, 16, 5–6.

    Article  Google Scholar 

  • Emirbayer M., & Sheller M. (1998). Publics in history. Theory and Society, 27, 727–779.

    Article  Google Scholar 

  • Epstein S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley: U California Press.

    Google Scholar 

  • Ferrando A.A., & Look A.T. (2004). DNA microarrays in the diagnosis and management of acute lymphoblastic leukaemia. International Journal of Hematology, 80, 395–400.

    Article  Google Scholar 

  • Fine G., & Sandstorm K. (1988). Knowing children: Participant observation with minors. London: SAGE.

    Book  Google Scholar 

  • Giddens A. (1990). The consequences of modernity. Cambridge: Polity Press.

    Google Scholar 

  • Glaser B., & Strauss A. (1967). Discovery of grounded theory. Chicago: Aldine.

    Google Scholar 

  • Goffman E. (1959). The presentation of self in everyday life. Garden City, NY: Doubleday.

    Google Scholar 

  • Gold E.R. (1997). Body parts: Property rights and the ownership of human biological materials. Washington, DC: Georgetown UP.

    Google Scholar 

  • Gouldner A. (1960). The norm of reciprocity: A preliminary statement. American Sociological Review, 25, 161–178.

    Article  Google Scholar 

  • Hedgecoe A.M. (2004). Critical bioethics: Beyond the social science critique of applied ethics. Bioethics, 18, 120–143.

    Article  Google Scholar 

  • Hoeyer K. (2004). Ambiguous gifts: Public anxiety, informed consent and biobanks. In Tutton R. & Corrigan O. (Eds), Genetic databases: Ethical issues in the collection and use of DNA. London: Routledge.

    Google Scholar 

  • Kass L. (1988). The wisdom of repugnance. In Kass L. & Wilson J. (Eds.), The ethics of human cloning. Washington, DC: American Enterprise Institute.

    Google Scholar 

  • Khanna C., & Helman L.J. (2006). Molecular approaches in pediatric oncology. Annual Review of Medicine, 57, 83–97.

    Article  Google Scholar 

  • Kimbrell A. (1997). The human body shop: The cloning engineering and marketing of life. Washington, DC: Regnery Publishing Inc.

    Google Scholar 

  • Kleinman A. (1999). Moral experience and ethical reflection: Can ethnography reconcile them? A quandary for ‘the new bioethics’. Daedalus, 128(4), 69–98.

    Google Scholar 

  • Kolm S. (2005). Reciprocity: Its scope, rationality and consequences. In Kolm S. & Ythier J. (Eds), Handbook of the economics of giving, altruism and reciprocity, vol. 1. Oxford: North-Holland.

    Google Scholar 

  • Lane M. (2004). Bioethics, health, and inequality. The Lancet, 364, 1017–1019.

    Article  Google Scholar 

  • Laurie G. (2002). Genetic privacy: A challenge to medico-legal norms. Cambridge: Cambridge UP.

    Book  Google Scholar 

  • Lawrence S.C. (1998). Beyond the grave—the use and meaning of human body parts: A historical introduction. In Weir R.F. (Ed.), Stored tissue samples: Ethical, legal and public policy implications. Iowa City: U Iowa Press.

    Google Scholar 

  • Lock M. (2001). The alienation of body tissue and the biopolitics of immortalized cell lines. Body & Society, 7, 63–91.

    Article  Google Scholar 

  • McHale J., Habiba M., Dixon-Woods M., Cavers D., Heney D., & Pritchard-Jones K. (2007). Consent for childhood cancer tissue banking in the UK: The effect of the Human Tissue Act 2004. Lancet Oncology, 8, 266–272.

    Article  Google Scholar 

  • Mason K., & Laurie G. (2001). Consent or property? Dealing with the body and its parts in the shadow of Bristol and Alder Hey. Modern Law Review, 64, 710–729.

    Article  Google Scholar 

  • Mauss M. (1966). The gift: Forms and functions of exchange in archaic societies. London: Routledge & Kegan Paul.

    Google Scholar 

  • Miller P., Kurunmaki L., O'Leary T. Accounting, hybrids and the management of risk (2007). Accounting, Organizations and Society (in press) doi:101.1016.

  • Misztal B.A. (1996). Trust in modern societies: The search for the bases of social order. Cambridge, MA: Polity Press.

    Google Scholar 

  • Morgan L.M. (2002). ‘Properly disposed of’: A history of embryo disposal and the changing claims on fetal remains. Medical Anthropology, 21, 247–274.

    Article  Google Scholar 

  • Medical Research Council (2001). Human tissue and biological samples for use in research—Operational and ethical guidelines. London: MRC.

  • Nelkin D., & Andrews L. (1998). Homo economicus: Commercialization of body tissue in the age of biotechnology. Hastings Center Report, 28(5), 30–39.

    Article  Google Scholar 

  • Novas C. (2006). The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties, 1, 289–306.

    Article  Google Scholar 

  • Nuffield Council on Bioethics (1995). Human tissue: Ethical and legal issues. London: Nuffield Council on Bioethics.

  • Offer A. (1997). Between the gift and the market: The economy of regard. Economic History Review, 50, 450–476.

    Article  Google Scholar 

  • Otten A. (1986). Researchers’ use of blood, bodily tissues raises questions about sharing profits. Wall Street Journal, 29 January.

  • Parker M. (2005). When is research on patient records without consent ethical? Journal of Health Services Research & Policy, 10, 183–186.

    Article  Google Scholar 

  • Perley S.N. (1992). From control over one's body to control over one's body parts: Extending the doctrine of informed consent. New York University Law Review, 67, 335–365.

    Google Scholar 

  • Pfeffer N., & Kent J. (2007). Framing women, framing fetuses: How Britain regulates arrangements for the collection and use of aborted fetuses in stem cell research and therapies. BioSocieties, 2(4), 429–447.

    Article  Google Scholar 

  • Prior L. (2003). Belief, knowledge and expertise: The emergence of the lay expert in medical sociology. Sociology of Health & Illness, 25, 41–57.

    Article  Google Scholar 

  • Pritchard-Jones K., Kaatsch P., Steliarova-Foucher E., Stiller C.A., & Coebergh J.W. (2006). Cancer in children and adolescents in Europe: Developments over 20 years and future challenges. European Journal of Cancer, 42, 2183–2190.

    Article  Google Scholar 

  • Putnam R.D. (2000). Bowling alone: The collapse and revival of American community. New York: Touchstone.

    Book  Google Scholar 

  • Riley R.D., Heney D., Jones D.R., Sutton A.J., Lambert P.C., Abrams K.R. et al. (2004). A systematic review of molecular and biological tumor markers in neuroblastoma. Clinical Cancer Research, 10(1 part 1), 4–12.

    Article  Google Scholar 

  • Rose N. (2006). The politics of life itself. Princeton, NJ: Princeton UP.

    Google Scholar 

  • Rose N., & Novas C. (2005). Biological citizenship. In Ong A. & Collier S. (Eds), Global assemblages: Technology, politics and ethics as anthropological problems. Maiden, MA: Blackwell.

    Google Scholar 

  • Rosenberg C.E. (1999). Meanings, policies, and medicine: On the bioethical enterprise and history. Daedalus, 128, 27–46.

    Google Scholar 

  • Rothstein M.A. (2005). Expanding the ethical analysis of biobanks. Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 33, 89–101.

    Article  Google Scholar 

  • Scheper-Hughes N. (2001). Bodies for sale—Whole or in parts. Body & Society, 7, 1–8.

    Article  Google Scholar 

  • Seale C. (1999). The quality of qualitative research. London: SAGE.

    Book  Google Scholar 

  • Seale C., Cavers D., & Dixon-Woods M. (2006). Commodification of body parts: By medicine or by media? Body & Society, 12, 25–42.

    Article  Google Scholar 

  • Sebire N.J., & Dixon-Woods M. (2007). Towards a new era of tissue-based diagnosis and research. Chronic Illness, 3, 301–309.

    Article  Google Scholar 

  • Sharp L.A. (2000). The commodification of the body and its parts. Annual Review of Anthropology, 29, 287–328.

    Article  Google Scholar 

  • Silber I.F. (2003). Pragmatic sociology as cultural sociology: Beyond repertoire theory?. European Journal of Social Theory, 6, 427–449.

    Article  Google Scholar 

  • Slater D., & Tonkiss F. (2001). Market society: Markets and modern social theory. Cambridge: Polity.

    Google Scholar 

  • Smith M.A., & Anderson B.D. (2004). Commentary on ‘European collaboration in trials of new agents for children with cancer’ by Ablett et al. European Journal of Cancer, 40, 1893–1895.

    Article  Google Scholar 

  • Squier S.M. (1994). Babies in bottles: Twentieth-century visions of reproductive biology. New Brunswick, NJ: Rutgers UP.

    Google Scholar 

  • Squier S.M. (2004). Liminal lives: Imagining the human at the frontiers of biomedicine. Durham, NC: Duke UP.

    Book  Google Scholar 

  • Star S.L., & Griesemer J.R. (1988). Institutional ecology, ‘translations’ and boundary objects: Amateurs and professionals in Berkeley's museum of vertebrate zoology, 1907–39. Social Studies of Science, 19, 387–420.

    Article  Google Scholar 

  • Start R.D., Brown W., Bryant R.J., Reed M.W., Cross S.S., Kent G. et al. (1996). Ownership and uses of human tissue: Does the Nuffield bioethics report accord with opinion of surgical inpatients? British Medical Journal, 313, 1366–1368.

    Article  Google Scholar 

  • Strauss A.L. (1993). Continual permutations of action. New York: Aldine de Gruyter.

    Google Scholar 

  • Sturdy S. (2000). Medicine, health and the public sphere in Britain, 1600–2000. London: Routledge.

    Google Scholar 

  • The Times (1954). Progress made in study of common cold: Virus propagation in human tissue. 28 July: 5.

  • Titmuss R. (1970). The gift relationship. London: Allen & Unwin.

    Google Scholar 

  • Tutton R. (2002). ‘They want to know where they came from’: Population genetics, identity, and family genealogy. New Genetics and Society, 23, 105–120.

    Article  Google Scholar 

  • Tutton R. (2004). Person, property and gift: Exploring languages of tissue donation. In Tutton R. & Corrigan O. (Eds), Genetic databases: Socio-ethical issues in the collection and storage of DNA. London: Routledge.

    Google Scholar 

  • Waldby C., & Mitchell R. (2006). Tissue economies: Blood, organs, and cell lines in late capitalism. Durham, NC: Duke UP.

    Book  Google Scholar 

  • Weir R.F., & Olick R.S. (2004). The stored tissue issue: Biomedical research, ethics and law in the era of genomic medicine. Oxford: Oxford UP.

    Google Scholar 

  • Wellcome Trust and the Medical Research Council (2000). Public perceptions of the collection of human biological samples: Collection of human biological samples. London: Wellcome, MRC.

  • Wilson D. (2005). The early history of tissue culture in Britain: The interwar years. Social History of Medicine, 18, 225–243.

    Article  Google Scholar 

  • Wilson D. (2007). Whose body (of opinion) is it anyway? Historicising tissue ownership and problematising ‘public opinion’ in bioethics. In Rothman B.K. Armstrong E. & Tiger R. (Eds.), Advances in medical sociology, 9. Bioethical issues: Sociological perspectives. New York: Elsevier.

    Google Scholar 

  • Young B., Dixon-Woods M., Findlay M. & Heney D. (2002). Parenting in a crisis. Conceptualising mothers of children with cancer. Social Science & Medicine, 55, 1835–1847.

    Article  Google Scholar 

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Acknowledgements

The qualitative research reported in this study was funded by ESRC Science in Society Programme grant ESRC RES-151-25-0026. The historical research on ‘publics’ and tissue culture, performed by DW at Manchester University's Centre for the History of Science, Technology and Medicine (CHSTM), was funded by the Wellcome Trust. This study could not have been done without the support we received from the seven paediatric oncology centres at: Addenbrooke's Hospital Cambridge, Alder Hey Children's Hospital Liverpool, Birmingham Children's Hospital, Leicester Royal Infirmary, Royal Manchester Children's Hospital, Queen's Medical Centre Nottingham and the Royal Marsden Hospital Surrey. We thank the families and staff members who took part in our study, and those who recruited the participants, both for the efforts involved in recruitment and in gaining R&D approval for the study. The theorization of trust and its relationship with regulation was funded by ESRC grant RES-000-22-1908. Much of this paper was written up while Mary Dixon-Woods was a Distinguished Visiting Fellow at Queen Mary, University of London, and she gratefully acknowledges the support of the College and, in particular, conversations with Richard Ashcroft. Thanks to Gavin Cameron for many lively discussions of tumour banking.

Conflict of interest: Kathy Pritchard-Jones was chief investigator for the CCLG tumour bank from 1998 until 2005. She has an interest in promoting the collection and storage, with consent, of tissue samples from children with cancer for research purposes. No other author has a conflict of interest.

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Dixon-Woods, M., Wilson, D., Jackson, C. et al. Human Tissue and ‘the Public’: The Case of Childhood Cancer Tumour Banking. BioSocieties 3, 57–80 (2008). https://doi.org/10.1017/S1745855208005954

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