DEMENTIA RESEARCH: INFORMED, PROXY, AND ADVANCE CONSENT

在过去的50年里，知情同意原则一直是 保护参与研究的人类受试者的基石。 然而，当人们考虑到对痴呆症的研究，如阿尔茨海默病 一个人立即面临着一种疾病的两难境地 逐渐削弱潜在研究对象的能力 知情同意。伦理学家建议的成功的方法 解决这一困境包括：1)直接从 痴呆症患者，如果他们保留决定权，知情同意 能力，至少在缺席的情况下同意、偏好和价值观 给予知情同意的能力；2)事先征得同意； 利用先行指令进行仿照生前遗嘱的研究 医疗保健持久授权书在临床决策中的应用 3)以家庭为决策单位的更丰富的观念 尤其是考虑到家庭在生活中所扮演的角色 痴呆症患者。这个项目的中心目标是 实证研究这些建议的方法是否有助于 对痴呆症患者进行伦理研究是可行和有效的。 通过结合几个学科的观点，并通过使用 研究小插曲和录像同意会面的分析，这 项目将回答以下实际问题：痴呆症的能力 受试者参与研究决策，尽管他们 减值；多学科方法的效用 对痴呆症的知情同意和代理同意有更深的理解 研究；以及预先同意程序的有效性，包括 痴呆症受试者和代理人。

For the past 50 years, the doctrine of informed consent has been the cornerstone of the protection of human subjects involved in research. Yet, when one considers research on dementia, such as Alzheimer disease (AD), one is immediately confronted by the dilemma of an illness that gradually impairs the capacity of potential research subjects to give informed consent. The methods suggested by ethicists for successfully addressing this dilemma include: 1) obtaining information directly from people with dementia, informed consent if they retain decisional capacity, and at least assent and preferences and values in the absence of the capacity to give informed consent; 2) obtaining advance consent, using advance directives for research modeled after the living will and durable power of attorney for health care employed in clinical decision making; and 3) a richer notion of the family as the unit of decision making, especially considering the role that families play in the lives of people with dementia. The central aim of this project is to empirically study whether these proposed methods for facilitating ethical research on subjects with dementia are feasible and effective. By combining the perspectives of several disciplines, and by using research vignettes and analysis of videotaped consent encounters, this project will answer practical questions about: the ability of dementia subjects to participate in research decision making despite their impairments; the utility of a multidisciplinary approach to yield a deeper understanding of informed consent and proxy consent for dementia research;' and the effectiveness of an advance consent process involving dementia subject and proxy together.