BioSocieties

, Volume 3, Issue 1, pp 57–80 | Cite as

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

  • Mary Dixon-Woods
  • Duncan Wilson
  • Clare Jackson
  • Debbie Cavers
  • Kathy Pritchard-Jones
Article

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 cancer commodification history of medicine human tissue qualitative research solidarity 

Notes

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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Copyright information

© London School of Economics and Political Science 2008

Authors and Affiliations

  • Mary Dixon-Woods
    • 1
  • Duncan Wilson
    • 2
  • Clare Jackson
    • 3
  • Debbie Cavers
    • 4
  • Kathy Pritchard-Jones
    • 5
  1. 1.Department of Health SciencesSocial Science Research Group, University of Leicester, 2nd Floor, Adrian BuildingLeicesterUK
  2. 2.Centre for the History of Science, Technology and Medicine, University of Manchester, Simon BuildingManchesterUK
  3. 3.Department of Health SciencesSocial Science Research Group, University of Leicester, 2nd Floor, Adrian BuildingLeicesterUK
  4. 4.Oncology/General Practice, Edinburgh Centre for Neuro-oncology, Western General HospitalEdinburghUK
  5. 5.Children's DepartmentInstitute of Cancer Research, Royal Marsden HospitalSutton, SurreyUK

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