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本文引用的文献

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Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials.关于适度报酬是否属于参与临床试验的不当或不公正诱因的实证评估。
Arch Intern Med. 2004 Apr 12;164(7):801-3. doi: 10.1001/archinte.164.7.801.
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Anticipating informed consent: an empirical approach.预期知情同意:一种实证方法。
Am Psychol. 1973 Oct;28(10):913-25. doi: 10.1037/h0035597.
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Determining the identifiability of DNA database entries.确定DNA数据库条目的可识别性。
Proc AMIA Symp. 2000:537-41.
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Determinants of patient participation in clinical studies requiring informed consent: why patients enter a clinical trial.需要知情同意的临床研究中患者参与的决定因素:患者参与临床试验的原因。
Patient Educ Couns. 1998 Oct;35(2):111-25. doi: 10.1016/s0738-3991(98)00060-3.

作为调查参与因素的信息披露风险、风险认知以及对隐私和保密的担忧。

Risk of Disclosure, Perceptions of Risk, and Concerns about Privacy and Confidentiality as Factors in Survey Participation.

作者信息

Couper Mick P, Singer Eleanor, Conrad Frederick G, Groves Robert M

机构信息

University of Michigan, Survey Research Center, P.O. Box 1248, Ann Arbor, MI 48106-1248, U.S.A.

出版信息

J Off Stat. 2008;24(2):255-275.

PMID:21603156
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3096944/
Abstract

This article reports on a web-based vignette experiment investigating how likely subjects would be to participate in surveys varying in topic sensitivity and risk of disclosure. A total of 3,672 participants each responded to a series of eight vignettes, along with a variety of background questions, concerns about confidentiality, trust in various institutions, and the like.Vignettes were randomly assigned to respondents, such that each respondent was exposed to four levels of disclosure risk for each level of topic sensitivity (high versus low). Half the sample was assigned to receive a confidentiality statement for all eight vignettes, while the other half received no mention of confidentiality in the vignettes. The order of presentation of vignettes was randomized for each respondent.Respondents were also asked for their subjective perceptions of risk, harm, and social as well as personal benefits for one of the eight vignettes. Adding these questions permits us to examine how objective risk information presented by the researcher relates to the subjective perception of risk by the participant, and to assess the importance of both for their willingness to participate in the surveys described.Under conditions resembling those of real surveys, objective risk information does not affect willingness to participate. On the other hand, topic sensitivity does have such effects, as do general attitudes toward privacy and survey organizations as well as subjective perceptions of risk, harm, and benefits. We discuss the limitations and implications of these findings.

摘要

本文报道了一项基于网络的小案例实验,该实验调查了受试者参与不同主题敏感度和信息披露风险的调查的可能性。共有3672名参与者分别对一系列八个小案例做出回应,同时还回答了各种背景问题、对保密性的担忧、对各种机构的信任等问题。小案例被随机分配给受访者,以便每个受访者在每个主题敏感度级别(高与低)下都面临四种信息披露风险级别。一半的样本被分配接受关于所有八个小案例的保密声明,而另一半在小案例中未提及保密性。每个受访者的小案例呈现顺序都是随机的。受访者还被要求对八个小案例之一的风险、危害、社会以及个人利益进行主观感知。添加这些问题使我们能够研究研究人员提供的客观风险信息与参与者对风险的主观感知之间的关系,并评估两者对他们参与所描述调查的意愿的重要性。在类似于实际调查的条件下,客观风险信息不会影响参与意愿。另一方面,主题敏感度确实有这样的影响,对隐私和调查组织的总体态度以及对风险、危害和利益的主观感知也有这样的影响。我们讨论了这些发现的局限性和意义。