Ethics of paediatric genomics

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Dr Lilian Downie

Lil is a paediatric clinical geneticist with a special interest in congenital and childhood hearing impairment. Her clinical role is in perinatal genetics at the Mercy Hospital for Women. She is currently completing her PhD through the University of Melbourne and Murdoch Children's Research Institute on the genetics of deafness and genomic newborn screening. Through this work, she is leading an application for federal funding of genetic testing for childhood hearing impairment.

Kirsten Boggs

Kirsten Boggs is a professionally trained and certified Senior Genetic Counsellor. She has worked as part of the NHMRC-funded Australian Genomics (AG) initiative since 2016 and has contributed to a number of research projects and publications. More recently, Kirsten has been involved in the recruitment, consent process and genetic counselling of hundreds of paediatric rare disease patients across the Sydney Children's Hospital Network (SCHN), with the recent focus on the MRFF-funded Acute Care project (which she continues to support). This project looks at the feasibility and implementation of Ultra Rapid Genomic Sequencing in critically unwell children. This role allowed Kirsten to further develop her skills as a Genetic Counsellor, particularly with families making critical decisions within a traumatic environment, such as the Intensive Care Unit (ICU). Kirsten has also been involved in the contribution to the development of paper-based and online genomic consent documents, facilitation of genomic education workshops to ICU staff nationally, and development of standard operating procedure documents for rapid sample collection, shipment, and requirements.

Professor John Christodoulou

John has formal qualifications in paediatrics, medical genetics and genetic pathology. He is the Director of the Genetics Research Theme of the MCRI, co-leads the Brain and Mitochondrial Research Group, and holds a Chair of Genomic Medicine, Department of Paediatrics, University of Melbourne. His major research interest is the application of functional genomics in rare genetic disorders and he is a chief investigator of the Australian Genomics initiative. John is a Past President of the Human Genetics Society of Australasia (2005 – 2007). He is a Member of the General Division of the Order of Australia and a Fellow of the Australian Academy of Health & Medical Sciences.

Professor Lynn Gillam

Lynn Gillam is an experienced clinical ethicist, originally trained in philosophy (MA, Oxon, as a Rhodes Scholar) and bioethics (PhD). Lynn is the Academic Director of the Children's Bioethics Centre at the Royal Children's Hospital Melbourne. She is also a Professor in Health Ethics at the University of Melbourne, in the Department of Paediatrics. Lynn provides clinical ethics case consultation, and policy advice and leads research in paediatric clinical ethics. In 2018, Lynn was awarded the RCH Chairman's Medal, in recognition of this work. She also teaches ethics in the MD course, and other health professional degree courses at the University of Melbourne, and supervises research students at Honours, Masters and PhD levels.  In 2019, Lynn was made a Member of the Order of Australia for service to medical education in the field of bioethics.

Professor Ainsley Newson

Ainsley Newson is a Professor of Bioethics at the University of Sydney. Her research critically considers ethical issues in genomics, specifically how genomic technologies can be used well in research, clinical and population health settings. Ainsley has several publications on newborn screening and related technologies. She helped draft Australia's first Newborn Bloodspot Screening Policy Framework (2018) and in 2020-2021 was a member of the expert group that considered the inclusion of Severe Combined Immunodeficiency for screening. She is also a member of the NSW Health Newborn Screening Expert Advisory Group. Ainsley's research has generated over 150 academic, policy and general interest publications.

Dr Christopher Gyngell

Christopher Gyngell is a Team Leader in Biomedical Ethics at the Murdoch Children's Research Institute; Senior Lecturer in the Department of Paediatrics at the University of Melbourne; and Co-director of the Health, Law and Ethics Network. His research primarily focuses on ethical issues raised by novel biotechnologies including genome editing, genomic testing, and artificial intelligence. He holds honorary academic positions at the Melbourne Law School, and Welcome Centre for Ethics and Humanities at the University of Oxford.

Professor Clara Gaff

Clara Gaff is the Executive Director of Melbourne Genomics Health Alliance and leads the Genomics in Society group at the MCRI. Clara has been involved in the use of genetics and genomics in healthcare through roles in genetic counselling, management, health professional education, and strategic development in Australia and the UK.  She has received leadership awards from the National Society of Genetic Counselors (USA) and BioMelbourne Network. Clara is a current member of the Global Alliance for Genomics and Health Regulatory and Ethics Working Group and a recent member of the Australian Health Ethics Committee.

Dr Danya Vears

Danya Vears is a social scientist with a genetic counselling background who explores ethical issues relating to genetic testing. She is a Senior Research Fellow and Team Leader at the Biomedical Ethics Research Group, Murdoch Children's Research Institute, and holds honorary positions at the University of Melbourne, and as a Guest Professor at the Centre for Biomedical Ethics and Law, KU Leuven. Danya's current research focuses on the practical, social and ethical issues relating to the use of next-generation sequencing technologies in both clinical and research settings. Danya is a member of the Education, Ethics and Social Issues Committee of the Human Genetic Society of Australasia and also the Global Alliance for Genomics and Health.

Professor John Massie

John is the Clinical Director of The Children's Bioethics Centre. John is a clinical ethicist and paediatric respiratory physician at the RCH. Prof Massie looks after children with neuro-disability requiring ventilator support and also works in the RCH cystic fibrosis clinic. John has published widely about newborn screening for cystic fibrosis, genotype-phenotype correlation and reproductive genetic carrier screening. John has published a number of papers and book chapters of ethical issues relating to paediatric respiratory medicine and the medical humanities. John is the host of the CBC podcast show, Essential Ethics.

Dr Julian Koplin

Julian Koplin is a Lecturer in Bioethics at Monash University and holds honorary positions at the University of Melbourne and the Murdoch Children's Research Institute. His research interests include human tissue ethics and the ethical implications of new technologies.

Professor Julian Savulescu

Julian Savulescu is the Uehiro Chair in Practical Ethics at the University of Oxford, where he directs the Oxford Uehiro Centre for Practical Ethics and Wellcome Centre for Ethics and Humanities. He is also Visiting Professorial Fellow in Biomedical Ethics at the Murdoch Children's Research Institute, Distinguished Visiting Professor in Law at Melbourne University. He is a Fellow of the Australian Academy for Health and Medical Sciences and has an honorary doctorate from the University of Bucharest.

Katie Arkell

Katie Arkell has 20 years of experience in clinical research and project management in the public health sector and pharmaceutical industry. Katie has successfully designed and managed large collaborative multi-organisational clinical and governance programs within health service organisations nationally and internationally and her current role is as a Senior Project Officer with Melbourne Genomics Health Alliance implementing genomics into clinical practice across Victoria.  Katie has a Bachelor of Science (Hons Genetics), a Graduate Diploma in Genetic Counselling and recently completed her Master of Genomics and Health (UniMelb) in which her research project explored ethical implications of ultra-rapid genomic sequencing in the paediatric setting.

Dr Meg Wall

Meg Wall is a Genetic Pathologist at the Victorian Clinical Genetics Services. She has a medical degree from Monash University, trained in Haematology at the Alfred Hospital, completed her PhD studies in 2009 and became a Genetic Pathologist in 2014. Alongside over 14 years of experience in cytogenetics, Meg has co-authored more than 50 journal articles and two book chapters in the fields of genetics and haematology.

Professor Zornitza Stark

Zornitza Stark works for Australian Genomics and the Victorian Clinical Genetics Services (VCGS) in Melbourne. She completed her medical studies at the University of Oxford in the UK, before training in paediatrics at the Royal Children's Hospital in Melbourne, and in Clinical Genetics at VCGS. She completed a Masters of Bioethics at Monash University in 2013 and was awarded a doctorate in clinical genomics from the University of Oxford in 2017. Zornitza is passionate about the application of genomic technologies as a first-tier test for the diagnosis of rare disease in children. She has authored over 150 publications and leads several national genomics projects, including a rapid genomic testing program for critically ill infants and children.

Presented by The Centre for Ethics of Paediatric Genomics (CEPG)