Suppr超能文献

亨廷顿舞蹈症预测性检测:针对青少年检测请求的评估方法案例

Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents.

作者信息

Binedell J, Soldan J R, Scourfield J, Harper P S

机构信息

Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff, UK.

出版信息

J Med Genet. 1996 Nov;33(11):912-8. doi: 10.1136/jmg.33.11.912.

Abstract

Adolescents who are actively requesting Huntington's predictive testing of their own accord pose a dilemma to those providing testing. In the absence of empirical evidence as regards the impact of genetic testing on minors, current policy and guidelines, based on the ethical principles of non-maleficence and respect for individual autonomy and confidentiality, generally exclude the testing of minors. It is argued that adherence to an age based exclusion criterion in Huntington's disease predictive testing protocols is out of step with trends in UK case law concerning minors' consent to medical treatment. Furthermore, contributions from developmental psychology and research into adolescents' decision making competence suggest that adolescents can make informed choices about their health and personal lives. Criteria for developing an assessment approach to such requests are put forward and the implications of a case by case evaluation of competence to consent in terms of clinicians' tolerance for uncertainty are discussed.

摘要

主动自行要求进行亨廷顿氏病预测性检测的青少年给检测提供者带来了两难困境。由于缺乏关于基因检测对未成年人影响的实证证据,基于不伤害、尊重个人自主和保密等伦理原则的现行政策和指导方针,通常排除对未成年人的检测。有人认为,在亨廷顿氏病预测性检测方案中坚持基于年龄的排除标准与英国关于未成年人同意接受医疗的判例法趋势不一致。此外,发展心理学的贡献以及对青少年决策能力的研究表明,青少年能够对自己的健康和个人生活做出明智的选择。本文提出了制定此类请求评估方法的标准,并讨论了就临床医生对不确定性的容忍度而言,逐案评估同意能力的影响。

相似文献

6
Problems in genetic prediction for Huntington's disease.亨廷顿舞蹈症基因预测中的问题。
Lancet. 1989 Sep 9;2(8663):601-3. doi: 10.1016/s0140-6736(89)90721-6.
10
Ethical issues and Huntington's disease.伦理问题与亨廷顿舞蹈症。
S Afr Med J. 2013 Oct 11;103(12 Suppl 1):1023-6. doi: 10.7196/samj.7146.

引用本文的文献

3
Ethics in genetic counselling.遗传咨询中的伦理问题。
J Community Genet. 2019 Jan;10(1):3-33. doi: 10.1007/s12687-018-0371-7. Epub 2018 Jun 14.
5
Experiences of teens living in the shadow of Huntington Disease.生活在亨廷顿舞蹈症阴影下的青少年的经历。
J Genet Couns. 2008 Aug;17(4):327-35. doi: 10.1007/s10897-008-9151-6. Epub 2008 Mar 18.
6
Inappropriate genetic testing of children.对儿童进行不恰当的基因检测。
Arch Dis Child. 2000 Oct;83(4):283-5. doi: 10.1136/adc.83.4.283.
8
The genetic testing of children.儿童的基因检测。
J R Soc Med. 1997 Aug;90(8):419-21. doi: 10.1177/014107689709000802.

本文引用的文献

9
The genetic testing of children.儿童的基因检测
J Med Genet. 1994 Oct;31(10):743. doi: 10.1136/jmg.31.10.743.

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验