Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements.

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Abstract

Genomic testing is rapidly becoming established in clinical practice and research. In this paper we consider the ethical issues arising in genomic testing in children, focusing on the clinical context. After describing how genomics can be said to depart from genetics in ethically relevant ways, we introduce two case studies involving ethical issues in paediatric genomic testing. We then summarise and critically engage with recent professional statements regarding genomic testing in children; notably the 2015 position statement from the American Society for Human Genetics. To provide a conceptual framework for these debates, we then synthesise recent bioethics literature regarding appropriate concepts to use when making decisions regarding children, and applying them to genomic testing. We recommend an approach to genomic testing in children that is child-focused and flexibly applied, driven by a core clinical question. Finally, we examine the role that age and emerging capacity should play in these debates.