Because after he is eighteen years old, his comprehensive ability will be a bit different from today”: A Discourse Analytic Study of Professional-Parent-Child Interaction in Genetic Counselling Encounters

Abstract

In the last two decades an increasing number of discourse-oriented studies have studied genetic counselling (e.g. Pilnick & Zayts, 2012; Sarangi, 2013; Zayts & Sarangi, 2013). Most of this previous research has focused on dyadic interactions between medical professionals and adult clients, and comparatively little has been done on encounters involving minors, that is clients below the age of 18 years old (for exception, see Arribas-Ayllon et al, 2008, Clarke et al, 2011) Considering the familial nature of genetic counselling, children and adolescents are always to some extent involved in the process of genetic testing (either directly, that is when they are being tested; or indirectly, when the results of genetic tests performed on others are relevant to them); therefore, it is important to consider their involvement in process of counselling and decision-making. The starting point for investigation of the triadic interactions involving genetic professionals, adult clients and minors is that these encounters exhibit complex participation structure (Goffman, 1981), and an asymmetrical relationship among participants with regards to their knowledge and expertise. This paper focuses on triadic interactions in the context of genetic counselling for Sudden Arrhythmia Death Syndromes (SADS), complex diseases that can lead to sudden unexpected death without an observable cardiac structural defect in childhood and adulthood (Vavolizza et al, 2015). Drawing on a corpus of twenty video-recorded consultations and adopting theme-oriented discourse analysis (Roberts & Sarangi, 2005; Sarangi, 2010), we discuss the results of the structural, interactional and thematic mapping of these consultations that have revealed some fundamental differences between consultations for proband testing and cascade testing. These differences reflect various levels of participation of each of professionals, adult clients and minors. Overall, minors display a higher level of participation in proband testing, compared to cascade testing. The participation level is the highest during the stages of cardiac history taking and general lifestyle discussions. Possessing both institutional and adult authority (Aronsson and Rundström,1989), the genetic professionals solicit the participation of minors, but, in return, often receive minimal responses. Adolescent clients take on a more active role in medical discussions compared to children, and may self-initiate their contributions. Most frequently this is observed in family history taking when adolescents add on to the information provided by their parents. In the end this paper also addresses some methodological issues related to applying theme-oriented discourse analysis to Cantonese data, in particular the issues arising at different stages of research, including data transcription, translation, and mapping.