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Predictive genetic testing in children
1Murdoch Children's Research Institute, Royal Children's Hospital, Parkville, VIC. savulesj@cryptic.rch.unimelb.edu.au
Insights
Predictive genetic testing for children is recommended only when medically beneficial or for early-onset diseases. Ethical considerations and potential harms like discrimination must be weighed against benefits such as self-knowledge.
Area of Science:
- Medical Ethics
- Pediatric Genetics
- Bioethics
Background:
- Predictive genetic testing in children requires careful consideration of their best interests.
- Defining "best interests" encompasses psychosocial well-being and medical necessity.
Purpose of the Study:
- To outline the ethical framework for performing predictive genetic testing in pediatric populations.
- To delineate conditions under which predictive genetic testing is ethically permissible for children.
Main Methods:
- Ethical analysis of existing guidelines and case studies.
- Review of medical and psychosocial implications of genetic testing in minors.
Main Results:
- Testing is appropriate for conditions with childhood onset or where early intervention is crucial.
- Testing for adult-onset conditions without medical intervention in childhood is highly controversial.
- Competent minors can provide informed consent for predictive genetic testing.
Conclusions:
- Predictive genetic testing in children must prioritize medical benefit and psychosocial well-being.
- Potential harms, including discrimination and stigmatization, necessitate careful risk-benefit assessment.
- Non-medical benefits like self-knowledge and life planning are also significant considerations.
Abstract:
Predictive genetic testing should only be performed on children if it is in their best interests. "Interests" include psychosocial elements. Predictive testing is performed on children when there are interventions to prevent disease or to detect and treat it early and it is necessary to begin these interventions in childhood. It is also performed for diseases known to commence in childhood. Predictive testing in children for adult-onset conditions for which there is no medical intervention is highly controversial. Competent children and adolescents can consent to predictive genetic testing. Predictive testing can result in harm, such as discrimination (eg, in insurance entitlement or employment) and stigmatisation. Predictive testing can have important non-medical benefits in terms of self-knowledge and life planning.