Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child’s future autonomy
Parents, their children, whole exome sequencing and unsolicited findings: growing towards the child’s future autonomy"
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In a previous study we found that parents of children with developmental delay (DD) favoured acceptance of unsolicited findings (UFs) for medically actionable conditions in childhood, but
that preferences diverged for UFs with no medical actionability, or only in adulthood, and regarding carrier status. Sometimes the child’s future autonomy formed a reason for withholding UFs
for the present, despite an unfavourable prognosis concerning the child’s cognitive capabilities. This might be different for children undergoing whole exome sequencing (WES) for reasons
other than DD and who are expected to exert future autonomy. This is the focus of the current study. We conducted nine qualitative, semi-structured interviews with parents of children, ages
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