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

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.