Worth the Risk? Relationship of Incentives to Risk and Benefit Perceptions and Willingness to Participate in Schizophrenia Research

Worth the Risk? Relationship of Incentives to Risk and Benefit Perceptions and Willingness to Participate in Schizophrenia Research
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DOI:
10.1093/schbul/sbn003
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发表时间:
2009-07-01
影响因子:
6.6
通讯作者:
Palmer, Barton W.
Palmer, Barton W.
中科院分区:
医学1区
文献类型:
--
作者:
Dunn, Laura B.;Kim, Daniel S.;Palmer, Barton W.

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目的:为研究参与提供激励是一项广泛的实践,但研究很少。在精神分裂症研究中,在提供参与激励时,有关同意能力和潜在脆弱性的问题可能会引起关注。尽管经验主义的关注集中在精神分裂症的同意和决策能力上,但激励的问题基本上被忽视了。我们调查了精神分裂症和分裂情感障碍患者参与研究的意愿,以及与感知风险和收益的关系。方法:46名精神分裂症或分裂情感性障碍患者对5个假设研究小插曲的感知风险和获益进行评分。他们还表明了他们是否愿意参与5种激励水平(包括无报酬)。用马蒂斯痴呆评定量表评估认知能力。结果:风险评分与潜在个人收益呈负相关。对于所有情景,在感知风险和参与更高补偿的意愿之间发现了显著的相关性。相反,在每个情景中,较低的获益可能性与较高的报酬阈值相关。然而,即使在每种方案提供的最高支付水平下,也有相当大比例的受访者不愿意参与。风险评估和参与意愿(在所有补偿水平)与人口统计学变量或认知状态无关。结论:确定激励是否阻碍自愿主义仍然是实证伦理学研究的重要任务。评估潜在的研究参与者对参与的风险、利益和替代方案的理解和感知,将有助于确保知情同意履行其使命——体现尊重人的伦理原则。
Objective: Providing incentives for research participation is widely practiced but minimally studied. In schizophrenia research, questions about capacity to consent and potential vulnerability may raise concerns when offering incentives for participation. Despite empirical attention focused on consent and decision-making capacity in schizophrenia, the issue of incentives has been essentially ignored. We examined willingness to participate in research, in relation to perceived risks and benefits, among people with schizophrenia and schizoaffective disorder. Method: Forty-six people with schizophrenia or schizoaffective disorder rated perceived risks and benefits of 5 hypothetical research vignettes. They also indicated whether they would be willing to participate at each of 5 incentive levels (including no compensation). Cognition was assessed with Mattis Dementia Rating Scale. Results: Ratings of risk and potential personal benefit were inversely correlated. For all scenarios, significant correlations were found between perceived risk and willingness to participate for greater compensation. Conversely, lower perceived likelihood of benefit was associated with a higher compensation threshold for participation in each scenario. Even at the highest proffered payment level for each scenario, however, a substantial proportion of respondents were not willing to participate. Risk assessment and willingness to participate (at all levels of compensation) were not associated with demographic variables or cognitive status. Conclusions: Determining whether incentives impede voluntarism remains an important task for empirical ethics research. Assessing potential research participants' understanding and perceptions of risks, benefits, and alternatives to participation will help ensure that informed consent fulfills its mission-embodying the ethical principle of respect for persons.