PURPOSE The American College of Medical Genetics and Genomics supports parents' opting in or out of secondary analysis of 59 genes when their child has clinical exome/genome sequencing. We explored the reasons adolescents choose to learn certain types of results and the reasons they want to involve or not involve parents in decision-making. METHODS Adolescents recruited without clinical indication were offered independent, followed by joint choices with a parent to learn genomic results. After making independent choices, adolescent/parent dyads were interviewed to explore the reasons for their choices. Interviews were audio-recorded and transcribed. The constant comparative method was used to analyze 64 purposefully selected transcripts that included 31 from adolescents who excluded some or all potential results. RESULTS Three major themes informed adolescents' choices: (1) actionability of information, (2) knowledge seeking, and (3) psychological impact. Of adolescents who independently excluded some conditions (n=31), 58% changed their initial choices during the joint interview due to parental influence or improved understanding. Nearly all adolescents (98%) wanted to be involved in the decision-making process, and 53% wanted to make choices independently. CONCLUSIONS Our findings contribute empirical evidence to support the refinement of professional guidelines for adolescents' engagement and preferences in genetic testing decisions.

中文翻译：

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让青少年有发言权：青少年选择学习的遗传信息类型及其原因。

目的 美国医学遗传学和基因组学学院支持父母在孩子进行临床外显子组/基因组测序时选择加入或退出 59 个基因的二次分析。我们探讨了青少年选择了解某些类型的结果的原因以及他们想要或不让父母参与决策的原因。方法 招募的没有临床指征的青少年被独立提供，然后与父母共同选择以了解基因组结果。在做出独立选择后，青少年/家长二人接受采访，探讨他们选择的原因。访谈进行了录音和转录。使用持续比较方法分析了 64 份特意选择的成绩单，其中 31 份来自青少年，排除了部分或全部潜在结果。结果 青少年做出选择的三大主题：(1) 信息的可操作性，(2) 知识寻求，以及 (3) 心理影响。在独立排除某些条件的青少年中（n=31），58％的人由于父母的影响或理解的加深而在联合访谈中改变了最初的选择。几乎所有青少年 (98%) 希望参与决策过程，53% 希望独立做出选择。结论我们的研究结果提供了经验证据，支持完善青少年参与和偏好基因检测决策的专业指南。