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阿尔茨海默病的诊断与治疗:过去、现在和未来的伦理问题。

Diagnosis and management of Alzheimer's disease: past, present and future ethical issues.

机构信息

McGill Center for Studies in Aging, Douglas Mental Health Research Institute, Montréal, Québec, Canada.

出版信息

Prog Neurobiol. 2013 Nov;110:102-13. doi: 10.1016/j.pneurobio.2013.01.003. Epub 2013 Apr 8.

Abstract

There is great interest in the ethical issues associated with Alzheimer's disease (AD) and related dementias given the prevalence of AD and the evolving neuroscience landscape in matters of diagnoses and therapeutics. Much of the ethics discussion arises in the tension between the principle of not doing harm (principle of non-maleficence) in this vulnerable population and the development of effective treatments (principle of beneficence). Autonomy and capacity issues are also numerous, wide-ranging, and concern (1) day to day affairs such as driving safely and spending money wisely, (2) life-time events such as designating a legal representative in case of incapacity, making a will, (3) consenting to treatment and diagnostic procedures, (4) participating in research. The latter issue is particularly thorny and illustrates well the complexity of tackling concerns related to capacity. The impetus to protect AD patients has partly led to ethics regulation and policies making research on inapt patients more difficult because of stringent requirements for signed informed consent or for showing the value of the research to this specific patient population. New issues are arising that relate to earlier diagnosis using biomarkers and (possibly soon) the use of drugs that modify disease progression. We here summarize and discuss the different ethical issues associated with AD from a historical perspective, with emphasis on diagnostic and treatments issues.

摘要

鉴于阿尔茨海默病(AD)的普遍流行以及在诊断和治疗方面神经科学领域的不断发展,人们对与之相关的伦理问题产生了浓厚的兴趣。许多伦理讨论都是在这一弱势群体中不造成伤害(不伤害原则)和开发有效治疗方法(有益原则)之间的紧张关系中产生的。自主和能力问题也很多,范围很广,涉及(1)日常事务,如安全驾驶和明智花钱,(2)生活事件,如在丧失能力时指定法定代表人、立遗嘱,(3)同意治疗和诊断程序,(4)参与研究。最后一个问题尤其棘手,很好地说明了处理与能力相关的问题的复杂性。保护 AD 患者的动力在一定程度上导致了伦理规范和政策的制定,使得对不适合的患者进行研究变得更加困难,因为对签署知情同意书或向特定患者群体展示研究价值有严格的要求。新出现的问题与使用生物标志物进行早期诊断以及(可能很快)使用改变疾病进展的药物有关。我们在这里从历史的角度总结和讨论与 AD 相关的不同伦理问题,重点讨论诊断和治疗问题。

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