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是否有必要为儿童制定基因检测指南?

Are guidelines for genetic testing of children necessary?

机构信息

School of Medicine, University of Southampton, Boldrewood Campus, Bassett Crescent East, Southampton, SO16 7PX, Hampshire.

出版信息

Fam Cancer. 2010 Mar;9(1):23-5. doi: 10.1007/s10689-009-9278-0. Epub 2009 Aug 15.

DOI:10.1007/s10689-009-9278-0
PMID:19685282
Abstract

There is now a plethora of guidance on the genetic testing of children. This paper explores the recommendation that childhood testing for adult on-set conditions should be delayed until the child can make up their own mind. It analyses the underpinning arguments used to support this position and asks whether, given some of the problems with these, the guidelines are really necessary.

摘要

现在有大量关于儿童基因检测的指导意见。本文探讨了建议将儿童成年发病疾病的检测推迟到儿童能够自己做出决定的年龄。本文分析了支持这一立场的基本论点,并提出了考虑到这些论点存在的一些问题,这些指南是否真的有必要。

相似文献

1
Are guidelines for genetic testing of children necessary?是否有必要为儿童制定基因检测指南?
Fam Cancer. 2010 Mar;9(1):23-5. doi: 10.1007/s10689-009-9278-0. Epub 2009 Aug 15.
2
Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.健康相关的直接面向消费者的基因检测:对各公司在未成年人基因检测方面的政策进行综述。
Fam Cancer. 2010 Mar;9(1):51-9. doi: 10.1007/s10689-009-9253-9. Epub 2009 Jun 2.
3
Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.儿童遗传性癌症检测:同意、信息沟通和保密性的比较法律视角。
Fam Cancer. 2010 Mar;9(1):75-87. doi: 10.1007/s10689-009-9268-2. Epub 2009 Jul 17.
4
Information(al) matters: bioethics and the boundaries of the public and the private.信息问题:生物伦理学与公共领域和私人领域的界限
Soc Philos Policy. 2002 Summer;19(2):83-112. doi: 10.1017/s0265052502192041.
5
Ethical considerations of genetic testing.基因检测的伦理考量。
J Clin Ethics. 2002 Winter;13(4):316-23.
6
An ethical imperative: genetics education for physicians and patients.一项道德要求:对医生和患者进行遗传学教育。
Med Law. 2003;22(2):275-83.
7
Childhood genetic testing for familial cancer: should adoption make a difference?儿童遗传性癌症检测:收养是否应该有所不同?
Fam Cancer. 2010 Mar;9(1):37-42. doi: 10.1007/s10689-009-9262-8. Epub 2009 Jun 25.
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Ethical Implications of Direct-to-Consumer Hereditary Cancer Tests.面向消费者的遗传性癌症检测的伦理问题。
JAMA Oncol. 2018 Oct 1;4(10):1327-1328. doi: 10.1001/jamaoncol.2018.2439.
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The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information.《双螺旋:将关怀伦理应用于向基因亲属告知基因信息的义务》
Bioethics. 2016 Mar;30(3):181-7. doi: 10.1111/bioe.12176. Epub 2015 Jul 21.
10
Predictive genetic testing for conditions that present in childhood.针对儿童期出现的病症进行的预测性基因检测。
Kennedy Inst Ethics J. 2002 Sep;12(3):225-44. doi: 10.1353/ken.2002.0019.

引用本文的文献

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Sharing information about domestic violence and abuse in healthcare: an analysis of English guidance and recommendations for good practice.分享医疗保健中关于家庭暴力和虐待的信息:对英国指导意见和良好实践建议的分析。
BMJ Open. 2022 Jun 16;12(6):e057022. doi: 10.1136/bmjopen-2021-057022.
2
Rethinking the "open future" argument against predictive genetic testing of children.重新思考反对对儿童进行预测性基因检测的“开放未来”论点。
Genet Med. 2019 Oct;21(10):2190-2198. doi: 10.1038/s41436-019-0483-4. Epub 2019 Mar 21.
3
Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

本文引用的文献

1
"Family matters": a conceptual framework for genetic testing in children.“家庭事务”:儿童基因检测的概念框架
J Genet Couns. 2004 Feb;13(1):9-29. doi: 10.1023/b:jogc.0000013379.90587.ef.
2
From genetics to genomics: ethics, policy, and parental decision-making.从遗传学到基因组学:伦理、政策和父母决策。
J Pediatr Psychol. 2009 Jul;34(6):639-47. doi: 10.1093/jpepsy/jsn075. Epub 2008 Jul 22.
3
Predictive genetic testing of children for adult-onset diseases and psychological harm.对儿童进行成人期疾病的预测性基因检测及心理伤害。
在基因组医学中探讨家庭层面的隐私保密问题:一项针对医疗保健专业人员的焦点小组研究。
BMJ Open. 2017 Feb 3;7(2):e012443. doi: 10.1136/bmjopen-2016-012443.
4
Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents.对儿童进行成人发病疾病的预测性基因检测:与家长协商检测请求
J Genet Couns. 2017 Apr;26(2):244-250. doi: 10.1007/s10897-016-0018-y. Epub 2016 Sep 28.
5
Genomic Testing in The Paediatric Population: Ethical Considerations in Light of Recent Policy Statements.儿科人群中的基因组检测:鉴于近期政策声明的伦理考量
Mol Diagn Ther. 2016 Oct;20(5):407-14. doi: 10.1007/s40291-016-0210-7.
6
A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status.一项定性研究,旨在探究英国的专业人员如何做出对儿童进行镰状细胞携带者状态检测的决策。
Eur J Hum Genet. 2016 Feb;24(2):164-70. doi: 10.1038/ejhg.2015.104. Epub 2015 May 27.
7
"Both Sides of the Wheelchair": The Views of Individuals with, and Parents of Individuals with Friedreich Ataxia Regarding Pre-symptomatic Testing of Minors.“轮椅的两面”:弗里德赖希共济失调患者及其父母对未成年人症状前检测的看法
J Genet Couns. 2015 Oct;24(5):732-43. doi: 10.1007/s10897-014-9801-9. Epub 2015 Jan 17.
8
Genetic testing of children for predisposition to mood disorders: anticipating the clinical issues.对儿童进行情绪障碍易感性的基因检测:预见临床问题。
J Genet Couns. 2014 Aug;23(4):566-77. doi: 10.1007/s10897-014-9710-y. Epub 2014 Mar 22.
9
When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.当父母披露 BRCA1/2 测试结果时:他们的沟通方式和对后代反应的看法。
Cancer. 2012 Jul 1;118(13):3417-25. doi: 10.1002/cncr.26471. Epub 2012 Jan 9.
10
Predictive genetic testing in children: where are we now? An overview and a UK perspective.儿童预测性基因检测:我们目前处于什么阶段?综述及英国视角
Fam Cancer. 2010 Mar;9(1):3-7. doi: 10.1007/s10689-009-9299-8.
J Med Ethics. 2008 Apr;34(4):275-8. doi: 10.1136/jme.2006.019802.
4
Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers.未成年人的症状前和预测性基因检测:对指南和立场文件的系统评价
Clin Genet. 2006 Nov;70(5):374-81. doi: 10.1111/j.1399-0004.2006.00692.x.
5
Why test children for adult-onset genetic diseases?为什么要对儿童进行成人期发病的遗传疾病检测?
Mt Sinai J Med. 2006 May;73(3):609-16.
6
Genetic testing of children for adult-onset diseases: is testing in the child's best interests?对儿童进行成人期发病疾病的基因检测:检测是否符合儿童的最大利益?
Mt Sinai J Med. 2006 May;73(3):605-8.
7
An international survey of predictive genetic testing in children for adult onset conditions.一项针对儿童成人期发病疾病的预测性基因检测的国际调查。
Genet Med. 2005 Jul-Aug;7(6):390-6. doi: 10.1097/01.gim.0000170775.39092.44.
8
Genetic information: a joint account?遗传信息:联名账户?
BMJ. 2004 Jul 17;329(7458):165-7. doi: 10.1136/bmj.329.7458.165.
9
Ignorance, information and autonomy.无知、信息与自主性。
Theor Med Bioeth. 2001 Sep;22(5):415-36. doi: 10.1023/a:1013058801622.
10
Is there a case in favour of predictive genetic testing in young children?是否存在支持对幼儿进行预测性基因检测的案例?
Bioethics. 2001 Feb;15(1):26-49. doi: 10.1111/1467-8519.00210.