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知情同意、参与研究与阿尔茨海默病患者

Informed consent, participation in research, and the Alzheimer's patient.

作者信息

Howe Edmund

机构信息

Department of Psychiatry, Uniformed Services University of the Health Sciences, Bethesda, Maryland, USA.

出版信息

Innov Clin Neurosci. 2012 May;9(5-6):47-51.

PMID:22808449
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3398682/
Abstract

Patients with Alzheimer's disease may want to participate in research on Alzheimer's disease, but their participation involves exceptional considerations. Plans should be made for determining these patients' cognitive capacity on a regular basis; for example, throughout a study, cognitive capacity may decline, making it necessary for a patient's pre-designated surrogate decision maker to become more involved. Patients with Alzheimer's disease may also choose to designate someone other than their primary caregiver to be their surrogate decision maker. This article discusses these and other core ethical issues.

摘要

阿尔茨海默病患者可能希望参与阿尔茨海默病的研究,但他们的参与涉及特殊考量。应制定计划定期确定这些患者的认知能力;例如,在整个研究过程中,认知能力可能会下降,这就使得患者预先指定的替代决策者需要更多地参与进来。阿尔茨海默病患者也可能选择指定其主要照顾者以外的其他人作为其替代决策者。本文讨论了这些以及其他核心伦理问题。

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本文引用的文献

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Patient participation in medical and social decisions in Alzheimer's disease.阿尔茨海默病患者在医疗和社会决策中的参与。
J Am Geriatr Soc. 2011 Nov;59(11):2045-52. doi: 10.1111/j.1532-5415.2011.03661.x. Epub 2011 Oct 22.
2
Effect of public deliberation on attitudes toward surrogate consent for dementia research.公众讨论对痴呆症研究中代理同意态度的影响。
Neurology. 2011 Dec 13;77(24):2097-104. doi: 10.1212/WNL.0b013e31823648cb. Epub 2011 Oct 5.
3
Diagnostic misconceptions? A closer look at clinical research on Alzheimer's disease.诊断误区?深入探讨阿尔茨海默病的临床研究。
J Med Ethics. 2012 Jan;38(1):57-9. doi: 10.1136/medethics-2011-100026. Epub 2011 Aug 25.
4
The ethics of informed consent in Alzheimer disease research.阿尔茨海默病研究中知情同意的伦理问题。
Nat Rev Neurol. 2011 May 24;7(7):410-4. doi: 10.1038/nrneurol.2011.76.
5
Preservation of the capacity to appoint a proxy decision maker: implications for dementia research.保留指定代理人决策者的能力:对痴呆症研究的影响
Arch Gen Psychiatry. 2011 Feb;68(2):214-20. doi: 10.1001/archgenpsychiatry.2010.191.
6
Recruitment of subjects into clinical trials for Alzheimer disease.招募受试者参加阿尔茨海默病的临床试验。
J Am Osteopath Assoc. 2010 Sep;110(9 Suppl 8):S43-9.
7
Experts' opinions on ethical issues of genetic research into Alzheimer's disease: results of a Delphi study in the Netherlands.专家对阿尔茨海默病基因研究伦理问题的意见:荷兰德尔菲研究的结果。
Clin Genet. 2010 Apr;77(4):382-8. doi: 10.1111/j.1399-0004.2009.01323.x. Epub 2009 Dec 10.
8
Toward revising the ethical boundaries of research with noncompetent subjects.迈向修订针对无行为能力受试者的研究的伦理界限。
Am J Psychiatry. 2009 Feb;166(2):131-4. doi: 10.1176/appi.ajp.2008.08101600.
9
Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research.
J Med Ethics. 2009 Feb;35(2):140-4. doi: 10.1136/jme.2008.025049.
10
Older adults' attitudes toward enrollment of non-competent subjects participating in Alzheimer's research.老年人对无行为能力受试者参与阿尔茨海默病研究招募的态度。
Am J Psychiatry. 2009 Feb;166(2):182-8. doi: 10.1176/appi.ajp.2008.08050645. Epub 2008 Oct 15.