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重症监护中基因组学研究的替代同意

Surrogate consent for genomics research in intensive care.

作者信息

Shelton Ann K, Fish Anne F, Cobb J Perren, Bachman Jean A, Jenkins Ruth L, Battistich Victor, Freeman Bradley D

机构信息

ITT-Technical Institute, St Louis, Missouri, USA.

出版信息

Am J Crit Care. 2009 Sep;18(5):418-26; quiz 427. doi: 10.4037/ajcc2009473.

DOI:10.4037/ajcc2009473
PMID:19723862
Abstract

Surrogate decision makers may be poorly prepared to give informed consent for genomics research for their loved ones in intensive care. A review of the challenges and strategies associated with obtaining surrogates' consent for genomics research in intensive care patients revealed that few well-controlled studies have been done on this topic. Yet, a major theme in the literature is the role of health care professionals in guiding surrogates through the informed consent process rather than simply witnessing a signature. Informed consent requires explicit strategies to approach potential surrogates effectively, educate them, and ensure that informed consent has been attained.

摘要

在重症监护室中,替代决策者可能没有充分准备好为其亲人的基因组学研究提供知情同意。一项关于在重症监护患者中获得替代者对基因组学研究同意的挑战和策略的综述显示,关于这个主题的严格对照研究很少。然而,文献中的一个主要主题是医疗保健专业人员在指导替代者完成知情同意过程中的作用,而不仅仅是见证签名。知情同意需要明确的策略来有效地接触潜在的替代者,对他们进行教育,并确保获得了知情同意。

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Surrogate consent for genomics research in intensive care.重症监护中基因组学研究的替代同意
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引用本文的文献

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Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.儿科重症监护环境中的生物样本库:青少年/青年成人视角
J Empir Res Hum Res Ethics. 2018 Oct;13(4):391-401. doi: 10.1177/1556264618782231. Epub 2018 Jun 14.
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Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.
发展中国家对基因组研究的理解:对马里疟疾基因组计划参与者观点的定性研究
BMC Med Ethics. 2015 Jun 16;16:42. doi: 10.1186/s12910-015-0035-7.
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Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experience.在加纳农村地区开展遗传和基因组研究的知情同意问题:疟疾基因研究的经验定性研究。
BMC Med Ethics. 2012 Jul 2;13:15. doi: 10.1186/1472-6939-13-15.
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Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.关于构建一项用于评估对危重病基因变异研究态度的工具的考量因素。
J Empir Res Hum Res Ethics. 2012 Feb;7(1):58-70. doi: 10.1525/jer.2012.7.1.58.