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Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements
Ainsley J Newson1, Lisa Schonstein2
1Centre for Values, Ethics and the Law in Medicine, School of Public Health, University of Sydney, Level 1, Medical Foundation Building, 92-4 Parramatta Road, NSW, 2006, Australia. ainsley.newson@sydney.edu.au.
Insights
Genomic testing in children raises unique ethical considerations. A child-focused, flexible approach guided by clinical questions is recommended for ethical genomic testing in pediatric patients.
Area of Science:
- Bioethics
- Genetics
- Pediatric Medicine
Background:
- Genomic testing is increasingly integrated into clinical practice and research.
- Distinguishing genomics from genetics is crucial for ethical considerations.
Observation:
- Ethical dilemmas in pediatric genomic testing require careful consideration.
- Case studies highlight complex ethical issues in applying genomic technologies to children.
Findings:
- Recent professional statements, like the 2015 ASHG position, offer guidance on genomic testing in children.
- Synthesized bioethics literature provides a framework for decision-making in pediatric genomic testing.
Implications:
- An adaptable, child-centered strategy for genomic testing in children is proposed.
- The roles of a child's age and developing capacity in ethical decision-making warrant further examination.
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.
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