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Paper 108: Professional ambivalence: Accounts of ethical practice in childhood genetic testing

Michael Arribas-Aylon, Srikant Sarangi, Angus Clarke

Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere, the role of communication is a key aspect in the transmission of `genetic responsibility’ between adults and children. In the professional sphere, genetic responsibility is an interactional accomplishment emerging from competing views over what constitutes the `best interests’ of the child in relation to parental preferences on the one hand, and professional codes of practice on the other. In the present paper we extend our previous research into parental accounts of childhood genetic testing and explore the ethical explanations/descriptions of professionals in research interviews. Interviews (n=20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their families. We first identify four inter-related themes – juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation of the child’s autonomy, avoidance of parental responsibility and acknowledgement of uncertainty – and then, using Rhetorical Discourse Analysis, examine the range of devices through which ethical explanations are situationally illustrated: contrast, reported speech, constructed dialogue, character and event work. An important device for facilitating ethical explanations is the use of extreme case scenarios which reconstructs dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis of professional accounts suggests that ethical practice is not a simple matter of implementing principles but managing the practical consequences of interactions with parents and children. We conclude that more attention is needed to understand the way professional practitioners construct and share cases as useful illustrations of evidence-based ethical practice.

Cardiff School of Social Sciences, May(2008), ISBN 978-1-904815-73-0




Additional Information

 Key words: professional ethics, accounts, genetic counselling, genetic testing of children, rhetorical discourse analysis