Abstract: 

The proposed project aims to investigate risk communication and decision-making in the context of genetic counseling for Sudden Arrhythmia Death Syndrome (hereafter SADS) in Hong Kong. The data would be drawn from consultations with clients diagnosed with or at risk of developing SADS-related genetic conditions. A key focus of the study will be how professionals facilitate clients’ decision-making about testing and disclosure of test results. 

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The primary data comprised of approximately 50 authentic, video-recorded genetic counseling consultations will be supplemented by follow-up interviews with professionals and clients, observations of the research site, and relevant organizational documents. Using discourse analytic methods, we will explore the central themes of risk communication and decision making that were identified in the pilot study of the project. These themes include risk explanations, uncertainty management, reassurance, and family decision-making. We will examine the dynamics of risk communication “diachronically”: we will recruit clients within the same family to examine how risk communication changes across subsequent sessions. We will also investigate risk communication in two formats: face-to-face (genetic counselling sessions) and follow-up written communication (e.g. pre- and post-test counselling letters). We will research discourse and rhetorical communication strategies that professionals employ to facilitate risk communication. Ultimately, the project aims to identify how risk communication influences the (non-)uptake of genetic testing. 

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Objectives: 

• To use established discourse analytic methodologies to examine risk communication and its impact on clients’ decision-making in genetic counselling for SADS in Hong Kong.    

• To examine how risk communication and decision-making are contingent upon the sociocultural context in which the genetic counselling is situated.   

• To explore the central themes of genetic counselling for SADS relevant to risk communication and decision-making.   

• To examine how the interdisciplinary team constellation (genetic counselor,  cardiologist) impacts risk communication and decision-making.  

• To contribute to professional training and education, and policy making by identifying and disseminating effective practices of genetic counselling for SADS.   

• To raise the public awareness about SADS through developing Hong Kong specific client information sources (written and online) and organizing a SADS awareness week.  

• To build up a database of genetic counselling consultations for SADS for the purposes of professional training and education.