Poogoda Sachini, Lynch Fiona, Stark Zornitza, Wilkinson Dominic, Savulescu Julian, Vears Danya, Gyngell Christopher
Department of Paediatrics, University of Melbourne, Melbourne, VIC 3010, Australia.
Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, VIC 3052, Australia.
Children (Basel). 2023 May 30;10(6):970. doi: 10.3390/children10060970.
Rapid genomic testing (rGT) enables genomic information to be available in a matter of hours, allowing it to be used in time-critical settings, such as intensive care units. Although rGT has been shown to improve diagnostic rates in a cost-effective manner, it raises ethical questions around a range of different areas, including obtaining consent and clinical decision-making. While some research has examined the perspectives of parents and genetics health professionals, the attitudes of intensive care clinicians remain under-explored. To address this gap, we administered an online survey to English-speaking neonatal/paediatric intensivists in Europe, Australasia and North America. We posed two ethical scenarios: one relating to obtaining consent from the parents and the second assessing decision-making regarding the provision of life-sustaining treatments. Descriptive statistics were used to analyse the data. We received 40 responses from 12 countries. About 50-75% of intensivists felt that explicit parental consent was necessary for rGT. About 68-95% felt that a diagnosis from rGT should affect the provision of life-sustaining care. Results were mediated by intensivists' level of experience. Our findings show divergent attitudes toward ethical issues generated by rGT among intensivists and suggest the need for guidance regarding ethical decision-making for rGT.
快速基因组检测（rGT）能在数小时内提供基因组信息，使其可用于诸如重症监护病房等对时间要求严格的场景。尽管rGT已被证明能以具有成本效益的方式提高诊断率，但它在一系列不同领域引发了伦理问题，包括获得同意和临床决策。虽然一些研究探讨了父母和遗传学健康专业人员的观点，但重症监护临床医生的态度仍未得到充分研究。为了填补这一空白，我们对欧洲、澳大拉西亚和北美的英语新生儿/儿科重症监护医生进行了一项在线调查。我们提出了两个伦理情景：一个与获得父母的同意有关，另一个评估关于提供维持生命治疗的决策。使用描述性统计分析数据。我们收到了来自12个国家的40份回复。约50 - 75%的重症监护医生认为rGT需要获得父母明确同意。约68 - 95%的人认为rGT的诊断应影响维持生命护理的提供。结果受重症监护医生经验水平的影响。我们的研究结果表明，重症监护医生对rGT引发的伦理问题态度不一，并表明需要针对rGT的伦理决策提供指导。
