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Chunk #22 — 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 Working Group recognized that this is a transitional moment in the adaptation of genomic medicine where the parents of children undergoing sequencing do not have ready access to inexpensive, readily interpretable exome or genome sequencing in order to obtain personal risk information for the conditions on our minimum list. In the future, where parents might all have such access, the identification of an adult-onset disease variants in their children could be restricted. But at this moment in the evolution of clinical sequencing, an incidental finding relevant to adult disease that is discovered and reported through clinical sequencing of a child may be the only way in which that variant will come to light for the parent. As with the argument against preferences, the Working Group felt that masking or tailoring the reporting of such information according to the age of the patient could place an unrealistic burden upon laboratories facing increasing volumes of clinical sequencing. The Working Group also felt that the ethical concerns about providing children with genetic risk information about adult-onset diseases were outweighed by the potential