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[Presymptomatic genetic testing in minors should only be performed when intervention is possible]
Janne Bayer Andersen1, Birgitte Rode Diness, Karen Brøndum-Nielsen
1Klinisk Genetisk Klinik, Kennedy -Centret, Gamle Landevej 7, 2600 Glostrup. jannebayerandersen@gmail.com.
Ugeskrift for Laeger
|December 24, 2014
Summary
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.