集中护理中的快速基因组测试:卫生专业人员对道德挑战的观点
Katie Arkell1,2, Christopher Gyngell1,2,3, Zornitza Stark2,4,5
1Biomedical Ethics Research Group, Murdoch Children's Research Institute, Parkville, VIC 3052, Australia.
Children (Basel, Switzerland)
|May 27, 2023
概括
在NICU/PICU设置中的超快速基因组测序 (urGS) 对医疗保健专业人员提出了伦理挑战. 管理期望和调整治疗目标是有效实施urGS的关键问题.
科学领域:
- 基因组学就是基因组学.
- 医学伦理 医学伦理
- 儿科重症监护室的儿童重症监护室
背景情况:
- 超快速基因组测序 (urGS) 越来越多地用于新生儿和儿科重症监护室 (NICU/PICU).
- urGS在这些重症监护环境中具有显著的诊断和临床实用性.
研究的目的:
- 探索医疗保健专业人员 (HP) 关于在NICU/PICU中使用urGS的观点.
- 确定与UrGS相关的挑战,特别是关于治疗决策的挑战.
主要方法:
- 采用四个重点小组和两次采访经验丰富的HP的定性研究.
- 来自19名参与者的数据 (临床遗传学家,遗传咨询师,密集医生) 的诱导性内容分析.
主要成果:
- 在HP和家庭中为urGS结果设定现实的期望是一个重大挑战.
- 有关测试时间,对亲子关系的影响以及管理具有不确定的预后意义的结果存在担忧.
- 道德上的痛苦源于家庭和HPs后urGS诊断之间的治疗目标不一致.
结论:
- 在NICU/PICU中,对 HP 提出了伦理挑战,特别是在决策方面.
- 经验凸显了基因组学工作人员在治疗中断方面需要专门培训的需要.
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