[Presymptomatic genetic testing in minors should only be performed when intervention is possible]
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Janne Bayer Andersen1, Birgitte Rode Diness, Karen Brøndum-Nielsen
1Klinisk Genetisk Klinik, Kennedy -Centret, Gamle Landevej 7, 2600 Glostrup. jannebayerandersen@gmail.com.
Insights
Presymptomatic genetic testing for minors is debated. While consensus exists on testing for direct medical benefit, the inclusion of psychosocial factors remains contentious, highlighting a need for greater awareness.
Area of Science:
- Medical Genetics
- Bioethics
- Pediatric Healthcare
Context:
- Presymptomatic genetic testing in minors is a complex ethical and clinical issue.
- Guidelines from major medical genetics societies reveal varying perspectives.
- The debate centers on the definition of a child's best interest.
Purpose:
- To review and synthesize guidelines on presymptomatic genetic testing in minors.
- To identify areas of consensus and disagreement among major medical genetics societies.
- To highlight the need for further discussion and empirical evidence.
Summary:
- A consensus exists that presymptomatic genetic testing in minors is justifiable for direct medical or preventive benefits.
- Disagreement persists regarding the inclusion of psychosocial and familial considerations within the 'child's best interest' framework.
- There is a noted lack of empirical evidence to guide decision-making.
Impact:
- Recommends increased awareness of the multifaceted nature of presymptomatic genetic testing in pediatric populations.
- Informs ethical discussions and policy development in genetic testing for children.
- Underscores the need for research into the psychosocial impacts of genetic testing on minors and families.
Abstract:
Presymptomatic genetic testing in minors is subject to debate. We reviewed guidelines on the subject from four large medical genetics societies. A general consensus exists regarding presymptomatic testing with the main justification for such testing being the direct benefit to the child through medical intervention or preventive measures. The child's best interest is central, but there is disagreement as to whether psychosocial and familial aspects should be included in this concept. Empirical evidence is lacking. We recommend increased awareness regarding the complexity of this issue.