Gibbon, Sahra Elizabeth; (2003) Ethics, expertise and legitimacy in the cultural context of the new genetics; The case of BRCA genes in breast cancer. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

This thesis examines the social and cultural context of new genetic knowledge associated with breast cancer, namely two inherited 'susceptibility genes' BRCA1 and BRCA2 which were identified in the mid 1990s. It looks at how this knowledge is used, received and acted upon in two key social arenas; (a) Cancer Genetic Clinics and (b) a Breast Cancer Research Charity. In relation to other recent developments in the field of human and plant genetics, BRCA genetics has generated comparatively less public or media criticism, concern or controversy. Nevertheless it is at the forefront of an expanding field of clinical genetics. By looking at how this knowledge is transmitted at key sites of social interaction, this thesis contextualises the comparative 'silence' that has accompanied these developments. It explores how the knowledge and technologies associated with breast cancer genetics are sustained through collective practices and identifications, which necessarily involves the participation of those involved. However, the circuits of connection which link people and practices operate in complex non-linear ways that involve entanglements of agency, practice and power. These fractured channels of action and interaction are revealed in examining the ways that the 'expert' and 'ethical' dimensions of this new knowledge, are being negotiated. This analysis raises questions about recourse to a normative model of 'medicalisation or 'geneticisation' in understanding the development of new genetic knowledge. In these contexts, the passivity and subjugation of patients or lay persons cannot be assumed and the ambivalent subjectivities of medical professionals or scientists must be understood. This field of genetic knowledge is also accompanied by a particular framing of the 'social'. This emergent space of 'ethics' intersects with but also challenges the collective practices that sustain BRCA genes as a legitimate field of research and clinical practice.

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