Genetic professional-parent-child interactions in genetic counselling encounters for SADS in Hong Kong

Abstract

This paper examines triadic interactions with minors (children and adolescents) in genetic counselling for Sudden Arrhythmic Death Syndrome (SADS) in Hong Kong. Most discourse research on interactions with children have been conducted in pediatric encounters (Cahill & Papageorgiou, 2007). In genetic counselling, the involvement of minors poses specific ethical and moral dilemmas like whether parents should make decisions for their children regarding genetic testing or wait until the children reach adulthood. Plentiful studies have shown the importance of including children in the process of making healthcare decisions. (Botkin et al, 2015; McGill et al, 2019). In the context of SADS counselling, prompt decisions regarding testing is necessitated by the potentially fatal nature of the genetic condition. A fatal outcome could be avoided with some adjustments to lifestyle. As genetic diagnosis contributes to high success rate of avoiding negative outcomes (Giudicessi & Ackerman 2013), the testing of minors may save their lives. Applying theme-oriented discourse analysis (Roberts and Sarangi, 2005) to a corpus of 42 consultations for SADS, we examine minors’ participation in these consultations. Our analysis shows that minors are most involved in the history taking stage. We examine the specific discourse and linguistic strategies that genetic professionals employ to: (a) invite the minors’ participation; and (b) control the parents’ participation. By involving the minors in the history taking stage the professionals, on the one hand, ratify their presence and participation in these consultations, and ensure the accuracy of the collected medical history. On the other hand, the actual decision-making regarding testing in our corpus is managed by the adults.