top of page

Sudden Arrhythmia Death Syndrome (SADS) 


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. 

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. 


  • 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.  

突發心律失常死亡綜合症 (SADS)  


本研究項目就突發心律失常猝死綜合症(以下簡稱為SADS )在香港的遺傳諮詢服務,探討有關此病症的風險溝通和決策,並於SADS確診病人或高風險人士的診症期間收集數據。本研究其中一個重點是要了解醫護人員如何協助應診人士決定是否接受測試和透露測試結果。 

主要數據包括大約50段遺傳諮詢的錄影片段,加上與醫護人員和應診人士的後續訪問、對研究現場 (診症室) 的觀察資料和相關文件。運用話語分析的方法,我們將探討試點研究所指出的有關風險溝通和決策的中心主題。這些主題包括風險的解釋、不確定性的管理、給予應診人士安慰和家庭決策。我們將「歷時性」地研究風險溝通在一段時間內的變化:我們招募與應診人士來自同一家族的家人,研究風險溝通在經過之後的診症會有怎樣的變化。我們也研究風險溝通的兩種模式:會面式(遺傳諮詢服務)和書面交流(例如遺傳測試前後的輔導信件) ;研究醫護人員應該使用的話語和修辭的溝通策略,以促進風險溝通。最後,本研究亦會分析風險溝通如何影響遺傳基因測試的(不)接受率。 


  • 使用既定的話語分析方法來研究風險溝通及它怎樣影響香港的病人在SADS遺傳諮詢期間作出決定 

  • 研究風險溝通和病人決策如何受社會文化背景影響 

  • 探索SADS遺傳諮詢服務與風險溝通和決策相關的中心主題 

  • 研究跨學科團隊(遺傳諮詢人員和心臟病專家)如何影響風險溝通和決策 

  • 通過識別和傳播SADS遺傳諮詢服務的有效做法,以促進職業培訓和教育,以及政策的制定  

  • 透過建立針對香港病人的資源(包括書面和網上)和舉辦SADS宣傳週,從而提高公眾對SADS的意識 

  • 建立SADS遺傳諮詢服務的數據庫,以專業培訓和教育為目的 

bottom of page