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变异型克雅氏病症状前检测中的伦理考量。

Ethical considerations in presymptomatic testing for variant CJD.

作者信息

Duncan R E, Delatycki M B, Collins S J, Boyd A, Masters C L, Savulescu J

机构信息

Murdoch Children's Research Institute and the Bruce Lefroy Centre for Genetic Health Research, Royal Children's Hospital, Parkville, Australia.

出版信息

J Med Ethics. 2005 Nov;31(11):625-30. doi: 10.1136/jme.2005.011965.

Abstract

Variant Creutzfeldt-Jakob disease (vCJD) is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington's disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission.

摘要

变异型克雅氏病(vCJD)是一种致命的、可传播的神经退行性疾病,目前尚无有效治疗方法。vCJD源于牛海绵状脑病的人畜共患传播。现在有令人信服的证据表明,通过无症状携带者的输血可实现人际传播,专家警告说,真正的疫情可能尚未到来。开发可靠的非侵入性症状前诊断测试势在必行。对此类测试的研究进展良好。本文阐述了这些测试可用性的伦理含义,并与亨廷顿舞蹈症的预测性基因检测和HIV筛查进行了比较。考虑的首要问题是谁来接受检测,权衡对个人自主权的尊重与造福和保护社会的义务。提出了一种类似于HIV筛查但具有独特特征的模式:对所有血液/器官捐献者以及接受手术或侵入性操作且有重大疾病传播风险的个人进行强制检测。

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Estimation of the size of the vCJD epidemic.变异克雅氏病流行规模的估计。
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