Talk 1:  Challenges in genetic counselling in uncertainties

Stephen Lam

 

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Speaker's bio:

Dr. Stephen Lam is currently a consultant clinical geneticist, Director at the recently-established Clinical Genetics Service in the Hong Kong Sanatorium & Hospital where he had played a part in setting up. He was the Consultant Clinical Geneticist and Head of Clinical Genetic Service, Department of Health, Hong Kong [1990–2015]. Dr. Lam was a MBBS graduate from the University of Hong Kong. Subsequently, he was trained in Paediatrics and Clinical Genetics in Queen Elizabeth Hospital, Hong Kong and Guy's Hospital, London. For his research on Biochemical Genetics and Cytogenetics, he was awarded Doctor of Medicine at the University of Hong Kong in 1988. He is now Fellow of Hong Kong College of Paediatricians, Fellow of Royal College of Physicians of Edinburgh, and Fellow of Hong Kong Academy of Medicine.

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Talk 2: Can genomics remove uncertainty from adoption? Social workers’ and medical advisors’ accounts of genetic testing

Michael Arribas-Ayllon

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Genetic testing is controversial in adoption with professionals taking different positions on whether children should be protected from genetic information or whether it can be used to assist adoption. We argue that recent advances in ‘genome-wide’ testing add further complications to these debates. Twenty participants, including social workers, managers, medical advisors and paediatricians, were recruited from adoption services in England and Wales to explore their knowledge and reasoning of cases involving genetic testing. A key finding revealed that medical professionals reported increasing pressure to test children prior to adoption, while social workers justified testing on the basis that it reduced uncertainty and therefore assisted adoption. Professionals’ accounts of genetic testing suggest that social workers may not be aware of the potential indeterminacy of microarray and NGS technologies. This has important implications for adoption because increases in genomic uncertainty can stigmatise children and disadvantage their prospects for adoption

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Speaker's Bio:

Dr Michael Arribas-Ayllon is a sociologist of medical and scientific knowledge. His previous research has focussed on the application of genetic technologies in various clinical and professional domains. He is the lead author of Genetic Testing: Accounts of Autonomy, Responsibility and Blame and Psychiatric Genetics: From hereditary madness to Big Biology.

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Talk 3:  Elicitation of children’s understanding of information in genetic counseling for Sudden Arrhythmic Death Syndrome

Andy Hui

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Affirmation of children’s understanding of information delivered in genetic counselling is fundamental in obtaining children’s informed consent/assent during the shared decision-making process as well as education of condition management and future family planning. In this study, I focus on how the elicitation of children’s understanding is actually done in the clinic. I perform theme-oriented discourse analysis (Roberts & Sarangi, 2005) on 23 video/audio-recorded genetic counselling encounters for Sudden Arrhythmic Death Syndrome (SADS) involving children from the age of 3 to 17 in Hong Kong. It is found that children’s epistemic status (Heritage, 2012) is explicitly elicited through direct questioning (“do you understand?” or “do you have any questions?”) after genetic professionals deliver genetic, medical and institutional information to families or at the end of an encounter. I also report on how children’s epistemic status is negotiated and accounted for through various discourse strategies among genetic professionals, parents and children, such as constructing ‘current ignorance’ and ‘future competence’ in children, assertion of information access and character work.

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Speaker's bio:

Andy Hui is an MPhil Candidate at School of English, University of Hong Kong. His project draws on the activity type theory and discourse analysis to investigate the communicative process of pediatric genetic counselling for inherited cardiac arrhythmias in Hong Kong. Andy also holds a bachelor’s degree in Biochemistry and a part-time volunteer for a suicide prevention hotline service as well an online emotional support service for youth. Andy aspires to be a professionally trained genetic counsellor and psychosocial counsellor.

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