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关于亨廷顿舞蹈症症状前检测问题的全国研讨会,加的夫

National symposium on problems of presymptomatic testing for Huntington's disease, Cardiff.

作者信息

Tyler A, Morris M

出版信息

J Med Ethics. 1990 Mar;16(1):41-2. doi: 10.1136/jme.16.1.41.

Abstract

Presymptomatic testing for Huntington's disease has given rise to several ethical problems relating to such issues as confidentiality, the privacy of the individual, the testing of minors and informed consent in connection with blood sample donation. A multidisciplinary conference of staff from genetic centres involved with presymptomatic testing was organised in Cardiff to discuss these and other problems. Recommendations on good practice are described under four headings: pre- and post-test counselling; confidentiality in relation to test results; collection and storage of DNA, and criteria for testing.

摘要

亨廷顿舞蹈症的症状前检测引发了若干伦理问题,这些问题涉及诸如保密、个人隐私、未成年人检测以及与血样捐献相关的知情同意等。在加的夫组织了一次由参与症状前检测的基因中心工作人员参加的多学科会议,以讨论这些问题及其他问题。关于良好做法的建议在四个标题下进行了描述:检测前和检测后咨询;检测结果的保密;DNA的采集和储存,以及检测标准。

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