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关于参与基因研究项目的态度:一项知情同意模拟研究,比较抑郁症患者、糖尿病患者及无上述疾病者的观点

Attitudes Regarding Enrollment in a Genetic Research Project: An Informed Consent Simulation Study Comparing Views of People With Depression, Diabetes, and Neither Condition.

作者信息

Kim Jane Paik, Ryan Katie, Roberts Laura Weiss

机构信息

1 Stanford University, Palo Alto, CA, USA.

出版信息

J Empir Res Hum Res Ethics. 2019 Oct;14(4):328-337. doi: 10.1177/1556264619862467. Epub 2019 Jul 22.

Abstract

In this study, participants with a self-reported history of depression, diabetes, or no illness underwent a simulated informed consent process for a hypothetical genetic study related to depression or diabetes. Participants completed a survey assessing their perceived understanding of the research process, perceptions of its risks and benefits, their satisfaction with the informed consent process, and their readiness to make a hypothetical enrollment decision. All participants indicated strong readiness to make an enrollment decision regarding the research characterized in the simulation. Participants reported understanding the consent process relatively well and being generally satisfied with it. Greater concerns were expressed regarding psychosocial risks than biological risks for genetic studies on mental disorders. Our study documented positive attitudes toward volunteering for research that involved the collection of genetic data.

摘要

在本研究中,有自我报告的抑郁症、糖尿病病史或无疾病的参与者,针对一项与抑郁症或糖尿病相关的假设性基因研究,经历了模拟知情同意过程。参与者完成了一项调查,评估他们对研究过程的感知理解、对其风险和益处的看法、对知情同意过程的满意度,以及他们做出假设性参与决定的意愿。所有参与者均表示非常愿意就模拟中描述的研究做出参与决定。参与者报告称对同意过程理解得相对较好,总体上对其感到满意。对于精神障碍基因研究,人们对心理社会风险的担忧大于生物风险。我们的研究记录了对参与涉及收集基因数据研究的积极态度。

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