Biobank Participants' Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks.

IF 1.7 4区 哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2022-02-01 Epub Date: 2021-11-15 DOI:10.1177/15562646211055282
T J Kasperbauer, Colin Halverson, Abby Garcia, Peter H Schwartz
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引用次数: 5

Abstract

Biobank participants are often unaware of possible uses of their genetic and health information, despite explicit descriptions of those uses in consent forms. To explore why this misunderstanding persists, we conducted semi-structured interviews and knowledge tests with 22 participants who had recently enrolled in a research biobank. Results indicated that participants lacked understanding of privacy and data-sharing topics but were mostly unconcerned about associated risks. Participants described their answers on the knowledge test as largely driven by their trust in the healthcare system, not by a close reading of the information presented to them. This finding may help explain the difficulties in increasing participant understanding of privacy-related topics, even when such information is clearly presented in biobank consent forms.

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生物银行参与者对数据共享和隐私的态度:信任在降低感知风险中的作用。
生物样本库的参与者往往不知道他们的遗传和健康信息可能被用于何种用途,尽管在同意书中明确说明了这些用途。为了探究这种误解持续存在的原因,我们对22名最近加入研究生物银行的参与者进行了半结构化访谈和知识测试。结果表明,参与者缺乏对隐私和数据共享主题的理解,但大多不关心相关风险。参与者描述他们在知识测试中的答案主要是由他们对医疗保健系统的信任驱动的,而不是通过仔细阅读提供给他们的信息。这一发现可能有助于解释在增加参与者对隐私相关主题的理解方面存在的困难,即使这些信息已在生物库同意书中清楚地呈现出来。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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