"A feeling that you're helping": proxy decision making for Alzheimer's research.
"A feeling that you're helping": proxy decision making for Alzheimer's research.
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DOI：
10.1353/nib.2011.0034
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发表时间：
2011-01-01
影响因子：
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通讯作者：
Roberts, Laura Weiss
中科院分区：
文献类型：
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作者：
Dunn, Laura B;Hoop, Jinger G;Roberts, Laura Weiss
代理决策者必须为缺乏决策能力的痴呆症患者做出研究决定。代理人的决策过程是最低限度的理解。我们随机分配了82名AD患者的代理人，让他们对三种具有不同风险和获益水平的假设方案之一进行知情同意。代理人回答了有关所述研究对患者和社会的潜在益处的问题，以及他们是否会招募他们的亲属以及为什么或为什么不。有兴趣招募他们的亲属的代理人引用了他们的亲属直接受益的潜力，利他主义和对研究人员的信任。那些拒绝的人列举了风险、不便和疾病阶段。代理人权衡了许多因素，在其决策过程中纳入了替代判断和最佳利益标准。虽然需要进一步的实证工作，以了解代理人的决策有关研究的影响和充分性，这些研究结果可以帮助有关代理同意告知政策。
Surrogate (proxy) decision makers must make research decisions for people with dementia who lack decision-making capacity. Proxies' decision-making processes are minimally understood. We randomly assigned 82 proxies of AD patients to informed consent for one of three hypothetical protocols with differing levels of risk and benefit. Proxies answered questions about potential benefits of the described research to the patient and society, as well as about whether they would enroll their relative and why or why not. Proxies interested in enrolling their relative cited the potential for direct benefit to their relative, altruism, and trust in researchers. Those declining cited risks, inconvenience, and stage of illness. Proxies weighed numerous factors, incorporating both substituted judgment and best interests standards in their decision-making processes. Although further empirical work is needed to understand the influences on and adequacy of proxies' decision making regarding research, these findings can help inform policy regarding surrogate consent.