Genetic test results are often relevant not only to persons tested, but also to their children. Questions of whether, when, and how to disclose parental test results to children, particularly minors, can be difficult for parents to navigate. Currently, limited data are available on these questions from the perspective of minors. In this qualitative study, semi‐structured interviews were conducted with parents affected by or at risk for hereditary cancer (N = 17) or Huntington's disease (N = 14) and their mature minor children aged 15–17 (N = 34). Parents and mature minors were interviewed separately. Genetic counselors (GCs; N = 19) were also interviewed. Most parents interviewed wanted to protect minors from genetic risk information (GRI) and feared minors would not be able to handle GRI. However, most mature minors reported they did not receive enough information and wished their parent was more forthcoming. Parents recommended taking time to process one's own test results before communicating with minors, and mature minors recommended parents communicate GRI in an honest, hopeful way. Most parents and GCs felt additional resources on communicating with minors about GRI and various genetic conditions are needed. This study includes the experiences and perspectives of a well‐informed cohort, and results should be taken into careful consideration by parents, GCs, and others who are faced with communicating GRI to minors.

中文翻译：

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是否、何时以及如何向未成年人传达遗传风险：“我想要更多信息，但我认为他们害怕我无法处理”

基因检测结果通常不仅与被检测者有关，而且与他们的孩子有关。关于是否、何时以及如何向儿童，尤其是未成年人披露父母测试结果的问题，对于父母来说可能很难解决。目前，从未成年人的角度来看，关于这些问题的数据有限。在这项定性研究中，对受遗传性癌症 ( N  = 17) 或亨廷顿氏病 ( N  = 14) 影响或有风险的父母及其 15-17 岁的成年未成年子女 ( N  = 34)进行了半结构化访谈。父母和成年未成年人分别接受采访。遗传咨询师 (GCs; N = 19) 也接受了采访。大多数受访家长希望保护未成年人免受遗传风险信息 (GRI) 的影响，并担心未成年人无法处理 GRI。然而，大多数成熟的未成年人报告说他们没有收到足够的信息，并希望他们的父母能更加坦诚。父母建议在与未成年人交流之前花时间处理自己的测试结果，成熟的未成年人建议父母以诚实、充满希望的方式交流 GRI。大多数父母和 GC 认为需要额外的资源来与未成年人交流 GRI 和各种遗传状况。本研究包括一个消息灵通的队列的经验和观点，父母、GC 和其他面临向未成年人传达 GRI 的人应仔细考虑结果。