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Chunk #21 — WORKING GROUP CONSIDERATIONS — Incidental Findings in Children

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ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.
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The standards for predictive genetic testing in clinical genetics recognize a distinction between providing results to adults and providing results to children and adolescents, with consistent recommendations that predictive testing for adult-onset diseases not be offered to children.23–25 However, these recommendations can be inconsistent with the general practice of respecting parental decision-making about their children’s health, and questions have been raised about the sustainability of these standards in an era of comprehensive genomic testing.26 One of these recent policy statements noted “…results from genetic testing of a child may have implications for the parents and other family members. Health care providers have an obligation to inform parents and the child, when appropriate, about these potential implications.”24 This statement suggests an important consideration in the era of genomic medicine since after sequencing a child for a primary indication, it becomes relatively easy for a laboratory to report a limited number of variants for conditions that could be medically important to that child’s future or to the rest of the family.