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

Published online by Cambridge University Press:  01 March 2008

Mary Dixon-Woods ,
Duncan Wilson ,
Clare Jackson ,
Debbie Cavers  and
Kathy Pritchard-Jones
Mary Dixon-Woods*
Affiliation:
Social Science Research Group, Department of Health Sciences, University of Leicester, 2nd Floor, Adrian Building, Leicester LE1 7RHUK E-mail: md11@le.ac.uk
Duncan Wilson
Affiliation:
Centre for the History of Science, Technology and Medicine, University of Manchester, Simon Building, Manchester, M13 9PL, UK
Clare Jackson
Affiliation:
Social Science Research Group, Department of Health Sciences, University of Leicester, 2nd Floor, Adrian Building, Leicester LE1 7RH,UK
Debbie Cavers
Affiliation:
Oncology/General Practice, Edinburgh Centre for Neuro-oncology, Western General Hospital, Crewe Road South, Edinburgh EH4 2XU, UK
Kathy Pritchard-Jones
Affiliation:
Institute of Cancer Research, Children’s Department, Royal Marsden Hospital, Downs Road, Sutton, Surrey SM2 5PT, UK
*
*Corresponding author.
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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.

Keywords

childhood cancercommodificationhistory of medicinehuman tissuequalitative researchsolidarity
Type
Articles
Information
BioSocieties , Volume 3 , Issue 1 , March 2008 , pp. 57 - 80
Copyright
Copyright © London School of Economics and Political Science 2008

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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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Anon (1987). Human tissue as alternative in biomedical research. Alternatives to Laboratory Animals, 14, 375–385.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Barr, M. (2006). ‘I’m not really read up on genetics’: Biobanks and the social context of informed consent. BioSocieties, 1, 251–262.CrossRefGoogle Scholar
Bauer, M.W. (2005). Public perceptions and the mass media in the biotechnology controversy. International Journal of Public Opinion Research, 17, 4–22.CrossRefGoogle 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.CrossRefGoogle Scholar
Belkin, G.S. (2004). Moving beyond bioethics: History and the search for medical humanism. Perspectives in Biology and Medicine, 47, 372–385.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Dickenson, D. (2004). Consent, commodification and benefit-sharing in genetic research. Developing World Bioethics, 4, 109–124.CrossRefGoogle ScholarPubMed
Dixon-Woods, M., Young, B., & Ross, E. (2006). Researching chronic childhood illness: The example of childhood cancer. Chronic Illness, 2, 165–177.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Docherty, S.,&Sandelowski, M. (1999). Interviewing children. Research in Nursing and Health, 22, 177–185.3.0.CO;2-H>CrossRefGoogle ScholarPubMed
Durbach, N. (2005). Bodily matters: The anti-vaccination movement in England, 1853—1907. Durham, NC:Duke UP.CrossRefGoogle Scholar
Einsiedel, E. (2007). Editorial: Of publics and science. Public Understanding of Science, 16, 5–6.CrossRefGoogle Scholar
Emirbayer, M., & Sheller, M. (1998). Publics in history. Theory and Society, 27, 727–779.CrossRefGoogle Scholar
Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley:U California Press.Google ScholarPubMed
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.CrossRefGoogle Scholar
Fine, G., & Sandstorm, K. (1988). Knowing children: Participant observation with minors. London: SAGE.CrossRefGoogle 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.CrossRefGoogle Scholar
Hedgecoe, A.M. (2004). Critical bioethics: Beyond the social science critique of applied ethics. Bioethics, 18, 120–143.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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 ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Laurie, G. (2002). Genetic privacy: A challenge to medico-legal norms. Cambridge:Cambridge UP.CrossRefGoogle 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.CrossRefGoogle 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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Medical Research Council (2001). Human tissue and biological samples for use in research—Operational and ethical guidelines. London:MRC.Google Scholar
Nelkin, D., & Andrews, L. (1998). Homo economicus: Commercialization of body tissue in the age of biotechnology. Hastings Center Report, 28(5), 30–39.CrossRefGoogle ScholarPubMed
Novas, C. (2006). The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties, 1, 289–306.CrossRefGoogle Scholar
Nuffield Council on Bioethics (1995). Human tissue: Ethical and legal issues. London: Nuffield Council on Bioethics.Google Scholar
Offer, A. (1997). Between the gift and the market: The economy of regard. Economic History Review, 50, 450–476.CrossRefGoogle Scholar
Otten, A. (1986). Researchers’ use of blood, bodily tissues raises questions about sharing profits. Wall Street Journal, 29 January.Google Scholar
Parker, M. (2005). When is research on patient records without consent ethical? Journal of Health Services Research & Policy, 10, 183–186.CrossRefGoogle 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 ScholarPubMed
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.CrossRefGoogle Scholar
Prior, L. (2003). Belief, knowledge and expertise: The emergence of the lay expert in medical sociology. Sociology of Health & Illness, 25, 41–57.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Putnam, R.D. (2000). Bowling alone: The collapse and revival of American community. New York:Touchstone.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.CrossRefGoogle ScholarPubMed
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 ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Scheper-Hughes, N. (2001). Bodies for sale—Whole or in parts. Body & Society, 7, 1–8.CrossRefGoogle Scholar
Seale, C. (1999). The quality of qualitative research. London: SAGE.CrossRefGoogle Scholar
Seale, C., Cavers, D., & Dixon-Woods, M. (2006). Commodification of body parts: By medicine or by media? Body & Society, 12, 25–42.CrossRefGoogle Scholar
Sebire, N.J., & Dixon-Woods, M. (2007). Towards a new era of tissue-based diagnosis and research. Chronic Illness, 3, 301–309.CrossRefGoogle ScholarPubMed
Sharp, L.A. (2000). The commodification of the body and its parts. Annual Review of Anthropology, 29, 287–328.CrossRefGoogle ScholarPubMed
Silber, I.F. (2003). Pragmatic sociology as cultural sociology: Beyond repertoire theory?. European Journal of Social Theory, 6, 427–449.CrossRefGoogle 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.CrossRefGoogle ScholarPubMed
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.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.CrossRefGoogle 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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle 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.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.CrossRefGoogle 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.Google Scholar
Wilson, D. (2005). The early history of tissue culture in Britain: The interwar years. Social History of Medicine, 18, 225–243.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar