Human Tissue and 'the Public': The Case of Childhood Cancer Tumour Banking
Human Tissue and 'the Public': The Case of Childhood Cancer Tumour Banking
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DOI：
10.1017/s1745855208005954
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发表时间：
2008-03-01
期刊：
影响因子：
1.6
通讯作者：
Pritchard-Jones, Kathy
中科院分区：
文献类型：
--
作者：
Dixon-Woods, Mary;Wilson, Duncan;Pritchard-Jones, Kathy
目前，关于人体组织研究用途的颇具影响力的报道将生物医学描述为与“公众”的规范和价值观背道而驰。利用历史分析和对79名癌症儿童家庭成员进行的定性研究的实证数据，本文对这种“公众”的说法提出了质疑。癌症儿童的家庭普遍报告说，他们认为自己是一个由共同使命感团结在一起的社区的成员，在这个社区中，价值观和利益是共享的，社区成员是值得信任的。组织对患者和家人的价值，与其说在于它体现了自我的某些本质，不如说在于它将患者植入儿童癌症社区的方式。历史分析表明，科学及其更广泛的“公众”是一种文化的相互依存、相互构成的组成部分，它们相互作用和交换与研究和研究材料有关的修辞和图像，以及材料本身。我们的证据表明，在用于研究的组织库领域，儿童癌症社区被更好地设想为一个混合体，而不是分离的‘生物科学’和‘公众’社交世界。将“公众”和“科学”理解为多样性，有助于澄清关于组织使用的经常相互矛盾的观点的存在。
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.