Surrogate consent for dementia research: a national survey of older Americans.
Surrogate consent for dementia research: a national survey of older Americans.
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DOI：
10.1212/01.wnl.0000339039.18931.a2
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发表时间：
2009-01-13
期刊：
影响因子：
9.9
通讯作者：
Appelbaum PS
中科院分区：
文献类型：
--
作者：
Kim SY;Kim HM;Langa KM;Karlawish JH;Knopman DS;Appelbaum PS
阿尔茨海默病（AD）新疗法的研究依赖于AD患者作为研究对象。由于AD损害决策能力，知情同意往往必须来自代理人，通常是近亲。但是，经过几十年的争论，关于研究的代理同意的政策仍然悬而未决。我们为2006年健康与退休研究浪潮的随机子样本（n = 1，515）设计了一个调查模块，该研究是对51岁及以上美国人的全国代表性样本进行的两年一次的调查。参与者回答了关于四个随机分配的基于替代研究（SBR）场景之一的问题：腰椎穿刺研究，药物随机对照研究，疫苗研究和基因转移研究。每个参与者都回答了三个问题：我们的社会是否应该允许家庭代孕同意，一个人是否想参加研究，以及一个人是否会允许自己的代孕一些或完全的回旋余地来推翻陈述的个人偏好。大多数受访者表示，我们的社会应该允许家庭代理同意SBR（67.5%至82.5%，取决于场景），并希望自己参与SBR（57.4%至79.7%）。大多数人也会给他们的代理人一些或全部的回旋余地（54.8%到66.8%），但这主要是那些愿意参与的人。有一个趋势，对较低的意愿，参与SBR中的那些从民族或种族少数群体。基于家庭代理同意的痴呆症研究得到了美国老年人的广泛支持。愿意让未来的替代者的余地需要进一步研究其伦理意义的替代者为基础的研究政策。
Research in novel therapies for Alzheimer disease (AD) relies on persons with AD as research subjects. Because AD impairs decisional capacity, informed consent often must come from surrogates, usually close family members. But policies for surrogate consent for research remain unsettled after decades of debate. We designed a survey module for a random subsample (n = 1,515) of the 2006 wave of the Health and Retirement Study, a biennial survey of a nationally representative sample of Americans aged 51 and older. The participants answered questions regarding one of four randomly assigned surrogate-based research (SBR) scenarios: lumbar puncture study, drug randomized control study, vaccine study, and gene transfer study. Each participant answered three questions: whether our society should allow family surrogate consent, whether one would want to participate in the research, and whether one would allow one’s surrogate some or complete leeway to override stated personal preferences. Most respondents stated that our society should allow family surrogate consent for SBR (67.5% to 82.5%, depending on the scenario) and would themselves want to participate in SBR (57.4% to 79.7%). Most would also grant some or complete leeway to their surrogates (54.8% to 66.8%), but this was true mainly of those willing to participate. There was a trend toward lower willingness to participate in SBR among those from ethnic or racial minority groups. Family surrogate consent–based dementia research is broadly supported by older Americans. Willingness to allow leeway to future surrogates needs to be studied further for its ethical significance for surrogate-based research policy.
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影响因子：
17.7
作者：
Kim, SYH;Cox, C;Caine, ED
通讯作者：
Caine, ED
影响因子：
38.9
作者：
Ciroldi, Magali;Cariou, Alain;Azoulay, Elie
通讯作者：
Azoulay, Elie
影响因子：
82.9
作者：
Tuszynski, MH;Thal, L;Conner, J
通讯作者：
Conner, J
影响因子：
3.3
作者：
Gutmann, A;Thompson, D
通讯作者：
Thompson, D
影响因子：
2.9
作者：
Karlsen, S;Nazroo, JY
通讯作者：
Nazroo, JY