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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: [email protected]
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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