Parents' preferences for unsolicited findings (UFs) from diagnostic whole-exome sequencing (WES) for their children remain largely unexplored. Our aim was to gain insight into parental considerations favoring acceptance/decline of UFs pertaining to their child. We conducted 20 qualitative, semistructured interviews with parents (n = 34) of children with a developmental delay, aged < 1 to 17 years, after consenting to WES, but before feedback of results. Key findings from our study were that all parents favored acceptance of UFs for medically actionable conditions in childhood, but that preferences and considerations diverged for UFs with no medical actionability, or only in adulthood, and regarding carrier-status. Sometimes non-medical utility considerations (considerations of usefulness of knowing UFs, not rooted in (preventive) medical treatment or controls) were given in favor of disclosure of UFs. Sometimes the child's future autonomy formed a reason to withhold UFs at present, despite an unfavorable prognosis concerning the child's cognitive capabilities. Some parents only preferred receiving UFs if these findings were directly related to their reasons for seeking a diagnosis. These findings are essential for developing morally responsible policy and for counseling. Further research should focus on whether considerations of non-medical utility alone can justify disclosure of UFs and whether reasons for seeking a diagnosis place further constraints on what UFs may be returned/withheld. How parents can be aided in contemplating different scenarios regarding their child's future development also deserves further inquiry.
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机译:BUZZ-YO-CHILD是一种袋装标签设备,其发明目的是在上学期间协助学生和家长。本发明将有助于使交通平稳地流过停靠降落区。大多数学校目前在放学期间面临许多问题,包括交通拥堵,学生坐在阳光下以及猜测父母何时开车经过。 Buzz Yo Child将在学校Wi-Fi系统上运行,并且家长将具有Buzz-Yo-Child应用程序,以将蜂鸣器警报发送到行李牌,以警告学生其父母在排队等候接送。