Deliberative assessment of surrogate consent in dementia research.
Deliberative assessment of surrogate consent in dementia research.
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DOI：
10.1016/j.jalz.2009.06.001
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发表时间：
2010-07
期刊：
影响因子：
--
通讯作者：
De Vries R
中科院分区：
文献类型：
--
作者：
Kim SY;Uhlmann RA;Appelbaum PS;Knopman DS;Kim HM;Damschroder L;Beattie E;Struble L;De Vries R
涉及失能痴呆症患者的研究涉及复杂的科学、法律的和伦理问题，这使得传统的调查外行对此类研究的伦理观点具有挑战性。因此，我们评估了民主审议（DD）--包括平衡、详细的教育和同侪审议--对痴呆症患者负责人的观点的影响。178名社区招募的照顾者或痴呆症患者的主要决策者被随机分配到全天DD会议组或对照组。由一个跨学科咨询小组审查了用于DD会议的教育材料的平衡性和准确性。我们从社会政策的角度以及从更个人的角度（为亲人或为自己决定（代理人和自我的观点））评估了痴呆症研究（“基于代理人的研究”或SBR）的家庭代理同意的可接受性，在基线时评估，DD会议后立即评估，DD日期后一个月，对于4种不同风险-受益特征的研究场景。在基线时，DD组和对照组中的大多数人都支持在所有研究场景中进行痴呆症研究的家庭同意政策。支持SBR的家庭同意的政策增加了DD组，但不是对照组; DD组的变化维持一个月后。在DD组中，从代理人或自我角度来看，态度有短暂的变化;在对照组中，从任何角度来看，对代理同意的态度与基线相比都没有变化。密集的，均衡的，准确的教育沿着由民主审议提供的同行审议导致持续增加的支持家庭同意痴呆症研究的社会政策中负责痴呆症患者。
Research involving incapacitated persons with dementia involves complex scientific, legal, and ethical issues, making traditional surveys of layperson views regarding the ethics of such research challenging. We therefore assessed the impact of democratic deliberation (DD)—involving balanced, detailed education and peer deliberation—on the views of those responsible for persons with dementia. 178 community-recruited caregivers or primary decision-makers for persons with dementia were randomly assigned to either an all-day DD session group or a control group. Educational materials used for the DD session were vetted for balance and accuracy by an interdisciplinary advisory panel. We assessed the acceptability of family surrogate consent for dementia research (‘surrogate-based research’ or SBR) from a societal policy perspective as well as from the more personal perspectives of deciding for a loved one or for oneself (surrogate and self perspectives), assessed at baseline, immediately post-DD session, and a month after DD date, for 4 research scenarios of varying risk-benefit profiles. At baseline, a majority in both DD and control groups supported a policy of family consent for dementia research for all research scenarios. The support for a policy of family consent for SBR increased for the DD group, but not for the control group; the change in the DD group was maintained one month later. In the DD group, there were transient changes in attitudes from surrogate or self perspectives; in the control group, there were no changes from baseline in attitude toward surrogate consent from any perspective. Intensive, balanced, and accurate education along with peer deliberation provided by democratic deliberation leads to a sustained increase in support for a societal policy of family consent for dementia research among those responsible for dementia patients.
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影响因子：
6.6
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