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知情同意与亨廷顿舞蹈症:一种沟通模式

Informed consent and Huntington disease: a model for communication.

作者信息

Sharpe N F

出版信息

Am J Med Genet. 1994 Apr 15;50(3):239-46. doi: 10.1002/ajmg.1320500306.

DOI:10.1002/ajmg.1320500306
PMID:8042667
Abstract

American and Canadian professional accreditation standards for medical genetics, and genetic counseling require certain abilities with regard to "communication." What remains unclear is how such standards are to be interpreted in terms of appropriate clinical protocols, objectives, and values. These issues have significant medical and legal implications, particularly with regard to medical malpractice. From the perspective of genetic testing for Huntington disease, this paper identifies those clinical objectives and practices which may be described as constituting the appropriate standard of care for "communication," and informed consent.

摘要

美国和加拿大医学遗传学及遗传咨询的专业认证标准对“沟通”提出了特定能力要求。尚不清楚的是,这些标准在适当的临床方案、目标和价值观方面应如何解读。这些问题具有重大的医学和法律意义,尤其是在医疗事故方面。从亨廷顿病基因检测的角度来看,本文确定了那些可被描述为构成“沟通”和知情同意适当护理标准的临床目标和做法。

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Informed consent and Huntington disease: a model for communication.知情同意与亨廷顿舞蹈症:一种沟通模式
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引用本文的文献

1
Psychological Model for Presymptomatic Test Interviews: Lessons Learned from Huntington Disease.症状前检测访谈的心理模型:从亨廷顿舞蹈症中汲取的经验教训
J Genet Couns. 2000 Feb;9(1):15-31. doi: 10.1023/A:1009425022687.
2
Nonparticipation in Huntington's Disease Predictive Testing: Reasons for Caution in Interpreting Findings.不参与亨廷顿舞蹈症预测性检测:解读研究结果时需谨慎的原因
J Genet Couns. 1997 Dec;6(4):419-32. doi: 10.1023/A:1025601010891.
3
Genetic counseling for psychiatric disorders.精神疾病的遗传咨询
Curr Psychiatry Rep. 2001 Apr;3(2):138-43. doi: 10.1007/s11920-001-0011-4.
4
The duty to recontact: benefit and harm.再次联系的义务:益处与危害。
Am J Hum Genet. 1999 Oct;65(4):1201-4. doi: 10.1086/302587.
5
Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents.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
J Med Genet. 1996 Nov;33(11):912-8. doi: 10.1136/jmg.33.11.912.
6
A sociobehavioural perspective on genetic testing and counselling for heritable breast, ovarian and colon cancer.关于遗传性乳腺癌、卵巢癌和结肠癌基因检测与咨询的社会行为学视角
CMAJ. 1996 Feb 15;154(4):457-64.