Objectives

To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure.

Data Sources

Qualitative interviews were used.

Conclusion

Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed.

Implications for Nursing Practice

As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS.

中文翻译：

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知识就是力量：父母同意为患有癌症的儿童和青少年进行下一代测序的收益、风险、希望和决策

目标

定性地描述父母对其癌症儿童进行下一代基因组测序 (NGS) 的观点，包括在同意或不同意 NGS 以及结果披露之前感知的好处、风险、希望/期望和决策过程。

数据源

使用了定性访谈。

结论

利他主义是父母同意 NGS 检测以及了解孩子的癌症和遗产建设的重要因素。家长描述了与 NGS 参与相关的现实希望和期望。尽管父母同意没有医疗福利的可能性，但同意 NGS 的人认为没有理由不参与。如果要披露生殖系变异，父母拒绝参与表示避免担心和父母内疚。

对护理实践的影响

随着 NGS 发展成为儿科癌症患者常规诊断检查的一个组成部分，基因护士在进行知情同意对话并确保患者和家属对 NGS 抱有切实的希望和期望方面发挥着作用。