Genetic Counselling

Abstract

This chapter focuses on one specific healthcare context of genetic counselling. Genetic counselling refers to encounters between a genetic professional, a client at risk of or diagnosed with a genetic disorder and the client’s family members in which the participants discuss the nature of the disorder, the probability of developing or transmitting it, and the ways in which it can be managed (Harper, 2004). In the last two decades there has been a proliferation of communication-oriented empirical research on genetic counselling in the English-dominant contexts that has primarily focused on mono-lingual and mono-cultural client population (e.g. Sarangi, 2000; Arribas-Ayllon, 2011). More recent studies have expanded their focus of analytic enquiry to non-English-dominant contexts (e.g. Zayts et al., 2013). This chapter draws on a large-scale communication-based study of genetic counselling in Hong Kong that has sprung over the last 10 years and focused on a range of genetic conditions that may occur within a lifespan of an individual. The study data corpus comprises 300+ video- and audio-recorded authentic genetic counselling consultations between Hong Kong Chinese genetic professionals and clients originating from 20+ countries. To contextualize genetic counselling in Hong Kong, the chapter first gives an overview of communication-oriented research generally, comparing genetic counselling with psychosocial counselling and mainstream medical encounters in terms of their specific interactional features and outlining critical issues of relevance to the professional practice. The chapter then discusses how the participants’ diverse sociocultural and linguistic backgrounds impact on the ways in which two critical activities of these encounters, namely information-giving and decision-making, are accomplished in an on-going talk-in-interaction. Using interactional sociolinguistics as the theoretical framework and applying the concept of contextualization cues (Gumperz 1982, 1992) the data analysis shows that while in some cases language and cultural backgrounds may indeed hinder information delivery and clients’ informed decision-making, in other cases participants draw on a range of verbal and non-verbal modes to ‘contextualize’ their non-understanding and to successfully achieve informed decisions. The analysis also shows that while it is important to reflect on the context-specific nature of genetic counselling, researchers have to go beyond focusing on participants’ linguistic and cultural backgrounds and consider the multifaceted nature of these communicative encounters and other contextual variables. To conclude, the chapter discusses implications of communication-oriented research for professional practice and training of genetic professionals.