Prof. Josephine Johnston, Senior Research Scholar, The Hastings Center, USA; Associate Professor of the Bioethics Centre, University of Otago, New Zealand delivered a talk on “Challenges to the Rule: A New Zealand Case Study” at the Seminar on Genetic Testing of Children for Adult-Onset Conditions which was co-organized by the CUHK Centre for Bioethics and Hong Kong Children’s Hospital (HKCH) on 12 March 2024 (Tuesday).

During the Seminar, Dr. Luk-Ho Ming, Consultant in-charge, Clinical Genetics Service Unit of HKCH and Dr. Timothy Cheng, Consultant, Genetic and Genomic Pathology, HKCH also shared their experience on the topic of “Pre-Symptomatic Genetic Testing in Children“, followed by a Discussion and Q&A Session co-moderated by Dr. Ivan Lo, Consultant, Clinical Genetics Service Unit of HKCH and Dr. Derrick Au, Advisor of the CUHK Centre for Bioethics.

About the Seminar

In New Zealand, like many countries, genetic testing for adult-onset conditions is not performed in children. This rule rests in large part on the “right to an open future’’–the idea that testing children for conditions that will not affect them until adulthood inappropriately breaches their autonomy. The rule stems from very specific Western philosophical traditions and laws and has recently been questioned by Māori whānau (families) and New Zealand academics in the context of genetic testing for mutations associated with hereditary stomach cancer. Can and should the rule be altered to reflect more collective understandings of self-determination and benefit, or indeed of genes themselves?