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Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations
Pascal Borry1, Gerry Evers-Kiebooms, Martina C Cornel
1Research Fund Flanders, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven, Leuven, Belgium. Pascal.Borry@med.kuleuven.be
European Journal of Human Genetics : EJHG
|March 12, 2009
Summary
This paper provides background for European Society of Human Genetics policy on genetic testing in minors. It covers ethical considerations, including best interests and parental responsibilities, for various genetic tests in children.
Area of Science:
- Medical Ethics
- Human Genetics
- Pediatric Healthcare
Background:
- Existing guidelines on genetic testing in minors lack specific endorsement from the European Society of Human Genetics.
- This paper addresses the ethical considerations for genetic testing in asymptomatic minors.
Purpose of the Study:
- To serve as a background document for developing policy recommendations on genetic testing in minors.
- To outline general considerations and specific testing types for genetic testing in pediatric populations.
Main Methods:
- Literature review and ethical analysis of genetic testing in minors.
- Discussion of key ethical concepts relevant to pediatric genetic testing.
Main Results:
- Exploration of the 'best interests' principle in pediatric genetic testing.
- Analysis of minors' participation in healthcare decisions and parental responsibilities for genetic information disclosure.
- Examination of the role of clinical genetics and healthcare systems in family communication.
Conclusions:
- Highlights the need for specific guidelines on genetic testing for minors.
- Addresses ethical complexities of presymptomatic, predictive, and carrier testing in pediatric contexts.
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