How important is 'accuracy' of surrogate decision-making for research participation?
How important is 'accuracy' of surrogate decision-making for research participation?
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DOI：
10.1371/journal.pone.0054790
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发表时间：
2013
期刊：
影响因子：
3.7
通讯作者：
De Vries R
中科院分区：
文献类型：
--
作者：
Kim SY;Kim HM;Ryan KA;Appelbaum PS;Knopman DS;Damschroder L;De Vries R
长期以来，人们一直担心代孕同意书在代表那些失去自主决定能力的人的医疗保健和研究偏好方面的准确性。我们征询了年龄较大的普通公众(50岁的≥)关于他们是否愿意参与痴呆症研究并给予未来的代理人回旋余地以选择与其声明的意愿相反的选项的知情、深思熟虑的意见。通过随机数字拨号招募的503名年龄在50岁以上的人被随机分配到三组中：审议组、教育组或对照组。审议小组参加了全天的教育/同伴审议会议；教育小组只收到了书面信息。参与者在基线、审议会议后(或相当的时间)和会议结束后一个月接受调查，了解他们参与痴呆症研究的意愿，并就不同风险-效益曲线的研究(腰椎穿刺法研究、药物随机对照试验、疫苗随机对照试验和早期基因转移试验)给代用品提供回旋余地。基线时，48%(基因转移情景)到92%(药物RCT)愿意参与未来的痴呆症研究。大多数受访者(57%至71%，视情况而定)愿意为未来的代孕决策者留出余地。民主党的审议增加了参与所有方案的意愿，在4个方案中的3个方案(腰椎穿刺术、疫苗和基因转移)中给予回旋余地，并在所有方案中招募亲人参与研究。平均而言，受访者更愿意自愿参与研究，而不是招募他们所爱的人。大多数人愿意给予他们的代理人回旋余地，这种意愿在民主审议后得到维持或增加，这表明对回旋余地的态度是可靠的意见。得出一个人目前对未来参与研究的偏好也应该包括得出他或她的回旋余地偏好。
There is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes. 503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57–71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones. Most people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person’s current preferences about future research participation should also involve eliciting his or her leeway preferences.