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Project Details
Funding Scheme : General Research Fund
Project Number : 17614217
Project Title(English) : Communicating Genetic Risk and Uncertainty across an Individual's Lifespan vis-à-vis Family: A Discourse Analytic Study of Genetic Counselling in Hong Kong  
Project Title(Chinese) : 名稱:個人生命周期內的遺傳風險和不確定性溝通及其與家庭之關係:香港遺傳諮詢話語分析 
Principal Investigator(English) : Dr Zayts, Olga A 
Principal Investigator(Chinese) :  
Department : School of English
Institution : The University of Hong Kong
E-mail Address : zayts@hku.hk 
Tel : 28592762 
Co - Investigator(s) :
Dr Chen, Katherine Hoi Ying
Dr Chung, Brian Hon Yin
Dr Lee, Chin Peng
Dr Lo, Fai-man
Prof Pilnick, Alison Marie
Dr Shipman, Hannah
Dr Tang, Hoi Yin Mary
Panel : Humanities, Social Sciences
Subject Area : Psychology and Linguistics
Exercise Year : 2017 / 18
Fund Approved : 496,465
Project Status : Completed
Completion Date : 30-6-2020
Project Objectives :
To build a database of genetic counselling consultations in Hong Kong across genetic conditions and diverse client and professional populations for the purposes of research, professional training and education.
To use an innovative research design to examine risk communication and its impact on the outcomes of genetic counselling in Hong Kong.
To examine risk communication vis-à-vis family, in particular, family kinship and dynamics when a genetic condition has to be managed within the existing family structures.
To examine how risk communication is contingent upon the sociocultural context in which the genetic counselling is situated.
To contribute to professional training, education, and policy-making by identifying and disseminating effective practices of genetic counselling for SADS and other genetic conditions.
To raise public awareness about genetic conditions through developing Hong Kong-specific client information resources (on-line and written).
Abstract as per original application
(English/Chinese):
The proposed project aims to investigate risk communication vis-à-vis uncertainty management and decision-making in genetic counselling for inherited conditions that may occur within an individual’s lifespan (namely, in prenatal, postnatal, adolescent and adult stages of one’s life). The notion of risk of occurrence of a genetic condition at the individual level is extended to consider the family perspective as there are risks associated with i) the process of genetic testing which invariably involves other family members, and ii) disclosure of genetic test results to at-risk family members. Interpersonal and sociocultural issues assume significance in how risk is communicated and perceived as a basis for decision-making. Since the same clients and family members attend more than one consultation, our interest lies in how professionals include family members in the testing process and whether (and how) the clients’ and the family members’ understanding of risk changes over the course of the consultations. The project consolidates the team’s previous work in Hong Kong with regard to prenatal (Down’s syndrome) and postnatal (G6PD deficiency) genetic counselling, and examines a novel context for adolescent and adult genetic counselling for Sudden Arrhythmia Death Syndrome (SADS). SADS includes genetic cardiovascular conditions that may cause death in young and seemingly healthy people. While over the last decade risk communication-oriented research has been undertaken, especially in the UK, the USA and also in Hong Kong, the nature and scope of risk communication in SADS have not been studied empirically. To investigate risk communication, the project proposes an innovative research design that: (a) integrates the insights from a range of disciplines; (b) draws on a large corpus of primary data of real-life genetic counselling consultations supplemented by interviews and focus groups with clients and family members; (c) employs a theme-oriented discourse analytic framework (Roberts and Sarangi, 2005); and (d) examines the interpersonal and sociocultural dimensions of risk perceptions. In addition to analysing the SADS dataset of 50 video-recorded consultations, meta-analysis will be undertaken of previously gathered data corpora concerning Down’s syndrome and G6PD deficiency to draw general conclusions about genetic risk communication, and about counselling diverse client populations. The meta-analysis will focus on the communication strategies that facilitate decision-making in the face of uncertainties and risks. The findings will be directly translatable to everyday clinical practice and public understanding of genetic risk inheritance. The project will add to the emerging healthcare communication practice and policy in South East Asia.
本項目旨在研究遺傳諮詢中風險溝通與不確定性管理及决策的互動機制。遺傳諮詢針對可能在個人生命周期內(即産前、産後、青少年和成年階段)發生的遺傳疾病。鑒于以下兩類風險的存在,基于對家庭視角的考量,我們擴展個體層面的遺傳疾病風險。這兩類風險爲:1)與家庭成員遺傳檢測相關的風險,2)將測試結果透漏給家庭成員的風險。在决策過程中,人際和社會文化因素在風險溝通和理解方面具有重要意義。由于同樣的病人及其家庭成員參加多次遺傳諮詢,我們的關注點在于醫務人員如何將家庭成員納入測試過程,以及病人和家庭成員對風險的理解在諮詢過程中是否(以及如何)發生變化。 該項目鞏固團隊已在香港完成的産前(唐氏綜合征)和産後(G6PD缺乏症)遺傳諮詢研究,幷探索遺傳諮詢新情境,即針對青少年和成人的突發性心律失常死亡綜合征(SADS)。 SADS包括可能導致青年人和表面看似健康的人死亡的遺傳性心血管疾病。雖然在過去十年中,以風險溝通爲導向的研究已經實施,特別是在英國、美國和香港,但SADS風險溝通的性質和範圍尚未得到實證究。 爲了研究風險溝通,該項目提出了一個創新的研究設計,具體特點爲:(1)整合多學科視角;(2)以真實遺傳諮詢爲主要數據,建立大型語料庫,輔以病人及家庭成員焦點小組訪談;(3)采用主題化話語分析框架(Roberts and Sarangi, 2005); (4)研究風險認知的人際和社會文化層面。除了分析50個SADS遺傳諮詢錄影外,本項目還將對先前收集的唐氏綜合征和G6PD缺乏症語料庫進行薈萃分析,得出關于遺傳風險溝通的普遍結論,以及向不同病人群體提供諮詢的經驗。薈萃分析將側重于在面臨不確定性和風險的情况下,那些促成决策的溝通策略。 本項目的研究結果可直接轉化爲臨床實踐,提供關于公衆對遺傳風險理解的信息。該項目將擴展東南亞地區逐漸興起的健康傳播實踐和政策討論。
Realisation of objectives: All the objectives of the project have been achieved successfully. Objective 1: The project has resulted in building an extensive unique database of genetic counselling consultations in Hong Kong. The database includes (a) new data of genetic counselling consultations for Sudden Arrhythmic Death Syndrome (SADS), and (b) consolidates the data from the previous projects on counselling for Down’s syndrome and G6PD deficiency. The database covers genetic conditions that may occur within an individual’s lifespan (prenatal, childhood, adolescent, and adult). It includes consultations with patients and family members from over 25 countries who speak English or Chinese (both Cantonese and Mandarin) as their first language in the consultations. As it was planned at the onset of the project, the database has been used for the purposes of research, professional training and education. It is expected that the data set will serve as a resource for future investigations of other aspects of genetic counselling communication in Hong Kong after the completion of the project. Objective 2: To investigate risk communication in genetic counselling the team has employed an innovative research design that draws on interdisciplinary insights that reflects the research team’s professional backgrounds; builds on examination of authentic interactional data of genetic counselling consultations; employs an integrated discourse analytic framework; pays particular attention to the sociocultural dimensions of communication; and draws on secondary data (e.g. interviews) that provides further contextual information and facilitates data interpretation. This research design has been employed in the project and is described in the publications that have resulted from this project (see Objective 5 for details). Objective 3: Family, family kinships and dynamics have comprised one of the main foci of investigation in the project. Specifically, the MPhil thesis that was completed as part of the project (by Mr. LC Hui “Children’s participation in genetic counselling: A theme-oriented discourse analytic investigation” focused on children and the role of family members in genetic counselling. Several publications that have resulted from the project specifically focus on family kinship and dynamics in genetic counselling. Objective 4: The focus on the sociocultural context of Hong Kong has comprised the novelty and the main contribution of the project. Much of the previous research on genetic counselling communication has been conducted in Anglo-dominant contexts. The project has specifically focused on how communication is dependent on the context where participants may not share linguistic and cultural backgrounds. This objective is reflected in three major publications in the project (in Journal of Genetic Counseling and American Journal of Medical Genetics), which align with one of the aims of the project to contribute to professional practice and training. Specifically, by disseminating the project findings through professional journals the team have aimed to raise the awareness among the genetic counselling professionals how risk and uncertainty pertinent to genetic counselling could be communicated to clients whose backgrounds require the use of lingua franca in an interaction, and whose cultural backgrounds call for specific interactional strategies to ensure that informed decision-making is achieved. Two major findings of the project with regards to this objective relate to (a) the importance of considering the backgrounds of genetic professionals, particularly when English (their second language) is used in the interactions; (b) understanding that language and culture (even when the participants do not share the same backgrounds) may not necessarily have an impact on the interactions. In other words, the project has highlighted the importance of context, and considering different contextual variables (e.g. socioeconomic backgrounds that impact clients’ decisions whether they opt for testing or not). Objective 5: The project has contributed to professional training, education, and policy-making by identifying and disseminating effective practices of genetic counselling for SADS and other genetic conditions. This has been achieved through presentations at multiple interdisciplinary and professional conferences. The PI has presented the project at the World Congress on Genetic Counselling at the University of Cambridge in 2019 (see project outputs for further details). The project outputs include publications in top international journals for genetic and genetic counselling professionals. In addition, the interdisciplinary project has built on close collaboration between linguists and genetic counselling professionals who have actively implemented the findings of the project in their ongoing practice and have actively participated in expert appraisal meetings. The PI has chaired a major international event, 3rd International E-Symposium on Health Communication in March, 2021 that has included a session on genetic counselling and genetic testing (featuring internationally renowned speakers and leading genetic professionals in Hong Kong). Objective 6: The online platform that the team have used to disseminate the project findings among the general public have been re-designed to make it more user friendly. Since the start of the project, the research team have set up Research and Impact Initiative for Communication in Healthcare (HKU RIICH, www.hkuriich.org; and @hkuriich on Twitter). The team has been actively publicizing its ongoing activities and published research through these online platforms that allow reaching a larger number of project beneficiaries. This work will continue after the completion of the project. The resource developed by the team on one of the conditions (G6PD deficiency) that is featured on the website of Clinical Genetic Services of Hong Kong and is used by hospitals has served as an example of developing a methodological communication-oriented framework that could be applied to other health resources. In subsequent projects the team will aim to publish this framework.
Summary of objectives addressed:
Objectives Addressed Percentage achieved
1.To build a database of genetic counselling consultations in Hong Kong across genetic conditions and diverse client and professional populations for the purposes of research, professional training and education. Yes100%
2.To use an innovative research design to examine risk communication and its impact on the outcomes of genetic counselling in Hong Kong. Yes100%
3.To examine risk communication vis-à-vis family, in particular, family kinship and dynamics when a genetic condition has to be managed within the existing family structures. Yes100%
4.To examine how risk communication is contingent upon the sociocultural context in which the genetic counselling is situated. Yes100%
5.To contribute to professional training, education, and policy-making by identifying and disseminating effective practices of genetic counselling for SADS and other genetic conditions. Yes100%
6.To raise public awareness about genetic conditions through developing Hong Kong-specific client information resources (on-line and written).Yes100%
Research Outcome
Major findings and research outcome: The project has consolidated the research team’s work on genetic counselling in Hong Kong by building on previous projects and the data collected in those projects and investigating a novel context of counselling for Sudden Arrhythmic Death Syndromes (SADS). Effective communication is particularly crucial in SADS contexts, as SADS conditions are potentially fetal but preventable if certain measures and lifestyle changes are implemented. The collected data in the project involves interactions with minors (i.e. children and adolescents under 18 years old) and their cognitive and decision-making abilities may make it particularly difficult for genetic professionals to communicate complex genetic information. The project has demonstrated that in interactions professionals typically orient to parents, as the children’s age increases there is an expectation of the children’s increased cognitive abilities and genetic literacy, which, however, do not impact the extent to which children are involved in decision-making. In genetic counselling literature there is an increasing interest to children’s assent/ consent, and the findings of the projects provide empirical evidence of existing practices and make suggestion on how children’s participation could be improved (see Hui et al. output submitted to Journal of Genetic Counseling). Major research findings of the project relate to the impact of language and culture on genetic counseling interactions (see Zayts et al., 2019; Zayts et al., 2021). Contrary to popular beliefs about communicative difficulties that arise in intercultural interactions, the differences in sociocultural backgrounds may not necessarily impact examined clinical interactions. In their work, the team have foregrounded the importance of other contextual factors, such as clients’ socioeconomic backgrounds, that impact decision about whether to take or to opt out of testing. This aligns with broader genetic counselling literature and the increasing call to consider factors, such as clients’ genetic literacy, sex, gender, occupation, mental health status, etc. that impact decision-making. A finding concerning sociocultural backgrounds of professionals is important for professional practice. In particular, the project has demonstrated that lower language proficiency of professionals may impact practices of informed consent (Zayts, 2021; Zayts and Hui, fc). The major findings of the project are based on empirical evidence that provides invaluable resources for training genetic counselling professionals in specific communication strategies to ensure that complex risk information and uncertainty are communicative clearly. These empirical findings are particularly valuable as to our knowledge this is the only work in the Region that is based on real-life interactions in the examined context.
Potential for further development of the research
and the proposed course of action:
The project offers ample opportunities for further development. The collected empirical database of authentic interactions between genetic counselling professionals, patients and family members will be used in the PI’s next project (Humanities and Social Sciences Prestigious Fellowship, HSSPF) “Talking Genetics: Intersections of Language, Culture and Genetic Literacy in Intercultural Genetic Testing and Counselling Contexts” that will involve completing a book-length manuscript. The project will focus on intercultural dimensions of communication, more specifically the interactions that involve at least one non-native speaker of English or Chinese. Another future development of the project that the PI would like to explore is how COVID-19 has impacted communication practices in genetic counselling, for example, the increased need for tele-genetic counselling (i.e. provision of services by distance using phones or computers). This will also be included in the HSSPF project. Several publications are at the stage of preparation at the moment in line with the dissemination activity to academic and professional communities. The project database of clinical interactions in genetic counselling will continue to be used for training purposes of future genetic counselling professionals in Hong Kong (MSc programme at HKU that is being revised at the time of submission of this report).
Layman's Summary of
Completion Report:
The project focused on how risk and uncertainty are communicated in genetic counselling. Three genetic conditions that may occur within an individual’s lifespan (in prenatal, childhood, adolescent and adult stages of one’s life) were examined. The project drew on real-life audio- and video-recorded consultations between genetic professionals, patients, and family members, and resulted in the creation of a unique empirical database of genetic counselling interactions. Two specific foci of the project were family kinship and dynamics, and sociocultural aspects of communication. Family dynamics of communication carry prominence in genetic counselling because of the inherited nature of genetic conditions. The focus on the sociocultural aspects of communication is significant as the research team has pioneered this research outside of the English-dominant contexts. The project’s interdisciplinary team of genetic counselling professionals and linguists has allowed to produce findings and outputs relevant to both professional and academic communities. Among the main outputs of the project are publications in top peer-reviewed international journals for professionals, lectures/ seminars at professional events. Findings will form part of training of genetic counselling professionals in Hong Kong (MSc programme at HKU). One MPhil dissertation on communicating with children in genetic counselling was completed as part of the project.
Research Output
Peer-reviewed journal publication(s)
arising directly from this research project :
(* denotes the corresponding author)
Year of
Publication
Author(s) Title and Journal/Book Accessible from Institution Repository
Zayts, O.*  The genomic quagmire of risk and uncertainty: A communication-oriented perspective (Target journal: Journal of Health Communication)  No 
Zayts, O.*  “There is a potential danger there”: Talk about death and dying in genetic counselling consultations for Sudden Arrhythmic Death Syndromes. (Target journal: Sociology of Health and Illness)  No 
2019 Zayts, O.*, Shipman, H., Fung JFJ., Liu APY., Kwok, SY., Tsai, ACH., Yung TC., Chung, HYB.  The different facets of 'culture' in genetic counselling: A situated analysis of genetic counselling in Hong Kong. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 181(2): 187-195.  Yes 
Hui, LC A.*, Zayts, O., Chung, H-Y. B.  Journal of Genetic Counseling  No 
2021 Zayts-Spence, O.*, Chung, BHY, Fung, JLF.  ‘Do language and culture really matter?’: A trans-disciplinary investigation of cultural diversity in genetic counseling in Hong Kong. Journal of Genetic Counseling, 30(1): 75-84.  No 
Zayts, O.*, Hui, LC A.  Informed consent-in-interaction in intercultural genetic counselling. In: J. Crichton and J. Martin (eds.) Handbook of Intercultural Communication in Healthcare (Handbooks in Applied Linguistics Series). Mouton de Gruyter  No 
Zayts, O.* and Bridges, S. (eds.)  (contracted by Routledge, submission in 2021). Language, Health and Culture: Problematizing ‘Global Centres’ and ‘Peripheries’ in Healthcare Communication Research”  No 
Zayts, O.*  Ethics and autonomy in intercultural communication in healthcare. To appear in: Crichton J. & Martin, G., eds., Handbook in Intercultural Communication in Healthcare. Mouton de Gruyter [invited lead chapter for a Handbook section]  No 
2019 Pilnick, A. * and Zayts, O.  The power of suggestion: examining the impact of presence or absence of shared first language in the antenatal clinic. Sociology of Health and Illness, 41 (6): 1120-1137.  No 
Zayts, O.* and Luo, Z.  Genetic literacy as a social practice: Discourse-based perspective. [Target journal: Public Understanding of Health]  No 
Luo, Z.* and Zayts, O.  The discursive construction and negotiation of genetic knowledge in an online health forum in Mainland China. In: Zayts, O. & Bridges, S. (eds). (fc) Language, Health and Culture: Problematizing ‘Global Centres’ and ‘Peripheries’ in Healthcare Communication Research. Routledge  No 
Recognized international conference(s)
in which paper(s) related to this research
project was/were delivered :
Month/Year/City Title Conference Name
Canberra The genomic quagmire of risk and uncertainty: Can communication scholars contribute to making the way through?  ANU International Symposium on Healthcare Communication. Australian National University 
Beijing, China “There is a potential danger there”: Talk about death and dying in genetic counselling consultations for Sudden Arrhythmic Death Syndromes.  The 2nd Peking University International Conference on Medical Humanities: Narrating Birth, Ageing and Death 
Birmingham, UK Clinical uncertainty and familial interactions in the inherited cardiac conditions clinic in Hong Kong: Reconsidering individualized notions of autonomy  Communication, Medicine and Ethics (COMET) conference 2018 
Birmingham, UK Directing, recommending and delegating decisions: examining the impact of presence or absence of shared first language in the antenatal clinic.  Communication, Medicine and Ethics (COMET) conference 2018 
Auckland, New Zealand Challenging the notion of ‘cultural norms’ in sociolinguist research: An example of leadership discourse in genetics case conferences in Hong Kong.  Sociolinguistic Symposium 
Milan, Italy Uncertainty and familial interactions in the inherited cardiac conditions clinic in Hong Kong: reconsidering notions of autonomy.  European Meeting on Psychosocial Aspects of Genetics (EMPAG) 
online The sociolinguistics of health and illness: Unsettling global ‘centres’ and ‘peripheries’ in health communication research [invited panel].  The sociolinguistics of health and illness: Unsettling global ‘centres’ and ‘peripheries’ in health communication research. 
Adelaide, Australia “Because after he is eighteen years old, his comprehensive ability will be a bit different from today”: Children’s participation in genetic counselling interactions.  17th Interdisciplinary Conference: Communication, Medicine & Ethics (COMET) 
Hong Kong The pragmatics of ‘global centres’ and ‘peripheries’ in healthcare communication research: An introduction. [panel]  16th International Pragmatics Association Meeting, Hong Kong 
Hong Kong “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.  16th International Pragmatics Association Meeting 
Wellington, New Zealand "We are afraid there is a potential danger there”: Talk about death and dying in genetic counselling for Sudden Arrhythmic Death Syndrome (SADS).  Interaction and Meaning 6 (IMean6) Conference 
online/ Hong Kong 3rd International E-Symposium on Health Communication "Advancing Frontiers of Health Communication Research, Education and Practice during the Pandemic" (thematic session: Issues in Genetic Counselling and Genetic Testing)   
Other impact
(e.g. award of patents or prizes,
collaboration with other research institutions,
technology transfer, etc.):

  SCREEN ID: SCRRM00542