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对抗亨廷顿舞蹈症计划的伦理问题

Ethical aspects of plans to combat Huntington's disease.

作者信息

Brackenridge C J

出版信息

J Med Ethics. 1981 Mar;7(1):24-7. doi: 10.1136/jme.7.1.24.

Abstract

Consideration is given to some strategies to combat Huntington's disease in the absence of treatment to arrest its progress. Ethical issues for tests such as levodopa loading, to provoke symptoms prematurely in carriers of the gene, are compared with those associated with schemes for delaying the onset of disease. The major drawback of these designs is the uncertainty that prodromal symptoms may be extended unduly and the severity of deferred symptoms worsened. Some attention is also given to the possible use of post-onset plans to reduce illness severity and prolong survival. It is concluded that the characteristics of persons less prone to undesirable consequences of onset-delay should be adequately investigated before attempting to implement such schedules as a practical measure.

摘要

在没有能够阻止亨廷顿舞蹈症病情进展的治疗方法的情况下,本文考虑了一些对抗该疾病的策略。诸如左旋多巴负荷试验(该试验会过早地诱发基因携带者出现症状)等检测所涉及的伦理问题,与那些与延缓疾病发作方案相关的伦理问题进行了比较。这些设计的主要缺点在于,前驱症状可能会被过度延长,以及延迟出现的症状的严重程度可能会加剧,而这存在不确定性。文中还对发病后计划用于减轻疾病严重程度和延长生存期的可能性给予了一定关注。得出的结论是,在试图将此类方案作为实际措施实施之前,应充分研究那些不太容易出现发病延迟不良后果的人群的特征。

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