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Treat him as a normal baby: paediatrician's framing of parental responsibility as advice in the management of a genetic condition

Abstract

Oral Presentation - Parallel Session 2: 2E Risk and Uncertainty/Ethics: no. 2E.4Parental responsibility in the management of genetic conditions has been the focus of both family-oriented interview-based research (e.g. Arribas-Ayllon et al. 2008; 2011) as well as real-life face-to-face genetic counselling research (Sarangi fc; Thomassen and Sarangi 2012). The current paper is an attempt to contribute to the latter tradition involving paediatricians and parents where parental responsibility is constitutive of professional advice. The genetic condition in question is G6PD deficiency (commonly known as favism), a mild hereditary disorder prevalent in Asia (Zayts and Sarangi 2013). We draw on 18 consultations in a maternal unit in Hong Kong (recruitment ongoing) where paediatricians communicate with mothers of newborns diagnosed with G6PD. We employ theme-oriented discourse analysis – comprising activity analysis and accounts analysis (Sarangi 2010) – to examine how the paediatricians frame their advice-giving trajectories – on to which elements of parental responsibility (in terms of future actions and moral selves) can be mapped. We show how 'causal responsibility' (Sarangi, fc) that concerns potential consequences of the mothers' actions in managing the condition emerges as a dominant thread in our data corpus. 'Causal [parental] responsibility' is embedded in the paediatrician's advice-giving trajectories which include, among other things, how to 'treat' these children, ranging from safeguards against certain medications and food to prevention of negative physiological scenarios (such as an acute hemolytic reaction). We examine closely the attendant discourse devices through which parental responsibility is framed, e.g., modalisation, contrast, character/event work. We conclude that, in terms of temporality, 'causal [parental] responsibility' is 'forward-looking' as the mothers' responsible actions can normalise the child’s immediate and future wellbeing.postprin

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