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Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness.参与基因研究的意愿:一项比较抑郁症、糖尿病或无疾病患者观点的初步研究。
J Psychiatr Res. 2017 Nov;94:156-162. doi: 10.1016/j.jpsychires.2017.07.002. Epub 2017 Jul 4.
2
The effect of depression on the decision to join a clinical trial.抑郁症对参与临床试验决策的影响。
J Consult Clin Psychol. 2017 Jul;85(7):751-756. doi: 10.1037/ccp0000212. Epub 2017 Apr 10.
3
Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India.参与基因研究:美国和印度的亚马逊土耳其机器人众包工人
Public Health Genomics. 2016;19(6):325-335. doi: 10.1159/000452094. Epub 2016 Nov 4.
4
A comparison of institutional review board professionals' and patients' views on consent for research on medical practices.机构审查委员会专业人员与患者对于医疗实践研究同意书的观点比较。
Clin Trials. 2016 Oct;13(5):555-65. doi: 10.1177/1740774516648907. Epub 2016 Jun 1.
5
Therapeutic Misconception in Psychiatry Research: A Systematic Review.精神病学研究中的治疗误解:一项系统综述。
Clin Psychopharmacol Neurosci. 2016 Feb 29;14(1):17-25. doi: 10.9758/cpn.2016.14.1.17.
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Demonstrating Patterns in the Views Of Stakeholders Regarding Ethically-Salient Issues in Clinical Research: A Novel Use of Graphical Models in Empirical Ethics Inquiry.展示利益相关者对临床研究中伦理突出问题的看法模式:图形模型在实证伦理探究中的新应用。
AJOB Empir Bioeth. 2015;6(2):33-42. doi: 10.1080/23294515.2014.995836.
7
The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.《贝尔蒙报告》。保护人类研究受试者的伦理原则与准则。
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Attitudes Toward Risk and Informed Consent for Research on Medical Practices: A Cross-sectional Survey.对医疗实践研究的风险态度与知情同意:一项横断面调查。
Ann Intern Med. 2015 May 19;162(10):690-6. doi: 10.7326/M15-0166.
9
Informed consent procedures with cognitively impaired patients: A review of ethics and best practices.知情同意程序与认知障碍患者:伦理与最佳实践的回顾。
Psychiatry Clin Neurosci. 2015 Aug;69(8):462-71. doi: 10.1111/pcn.12289. Epub 2015 Apr 13.
10
Giving voice to study volunteers: comparing views of mentally ill, physically ill, and healthy protocol participants on ethical aspects of clinical research.倾听研究志愿者的声音:比较患有精神疾病、身体疾病的协议参与者以及健康参与者对临床研究伦理方面的看法。
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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.

DOI:10.1177/1556264619862467
PMID:31328612
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6733621/
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。