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Updated: Oct 1, 2026

FISH for Pre-implantation Genetic Diagnosis
Published on: February 23, 2011
[Genetic screening in children]
1Centre national d'information sur les maladies génétiques, 102, rue Didot, 75014 Paris, France. briard@necker.fr
Insights
Genetic testing for children should prioritize their well-being. Early genetic status identification can improve care, but parental desires must not override the child
Area of Science:
- Pediatric Genetics
- Bioethics
- Clinical Decision-Making
Context:
- Genetic testing in children requires careful consideration of direct benefits.
- The child's best interest must guide decisions, not parental anxiety or hope.
- Early genetic information can impact medical management and psychological outcomes.
Purpose:
- To establish ethical guidelines for prescribing genetic tests to children.
- To differentiate between testing for childhood-onset diseases versus adult-onset conditions.
- To emphasize the child's autonomy and future well-being in genetic testing decisions.
Summary:
- Genetic testing for children is ethically justified only when it offers a direct benefit, such as early intervention for childhood diseases.
- Decisions must prioritize the child's welfare, protecting them from unnecessary medical surveillance or psychological distress.
- Testing for adult-onset conditions or risks solely affecting future descendants is inappropriate for minors.
Impact:
- Promotes responsible genetic testing practices in pediatric populations.
- Ensures that genetic information is used to benefit the child directly.
- Reduces potential harm from premature genetic knowledge and parental pressure.
Abstract:
Before giving a prescription on a genetic test, it is necessary to estimate if a real direct benefit exists for the children. This is right if the disease occurs during childhood and teenage and when the genetic status identified early may improve care, prevention and people accompaniment or if, on the contrary, knowing that the children has no risk to develop a disease will save him from a particularly restricted medical observation. At the opposite, letting him know his future may, for sure, cause him some trouble (disruption). The parents' distress and their hope for getting a negative test result should not be more important than the child's interest which has to prevail over his parents'. If the child has no risk to develop a genetic disease himself and if the risk concerns only his descendants, there is no reason for knowing his genetic status before he makes plans himself for his procreation.
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