Certificates of confidentiality in research: Rationale and usage

Certificates of confidentiality in research: Rationale and usage
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DOI:
10.1089/gte.2004.8.214
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发表时间:
2004-06-01
期刊:
GENETIC TESTING
影响因子:
--
通讯作者:
Ross, LF
Ross, LF
中科院分区:
其他
文献类型:
--
作者:
Cooper, ZN;Nelson, RM;Ross, LF

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保密证书(COCs)是一种保护研究人员免于被迫公布其研究对象身份信息的工具。机构审查委员会(IRB)审查和知情同意程序是保护人类受试者的强制性工具,而COCs是自愿的。关于谁获取COCs、为什么获取COCs以及它们是否有用的数据有限。国家卫生研究院(NIH)的三个研究所提供了收到COCs的114个研究项目的数据。83名研究人员采购了1份COC, 11名研究人员采购了31份COC。研究人员在学术站点获得的COCs有104份(91%),17个机构共获得82份COCs。最常被引用的COCs信息来源来自同事(n = 18, 35%)和以前的经验(n = 17, 33%)。获得COC的最常见原因是研究涉及遗传学(n = 28, 54%),研究可能导致社会污名化或歧视(n = 22, 42%),或者研究可能损害个人的财务状况,就业能力或声誉(n = 21, 40%)。这些发现表明,COCs通常聚集在机构内和特定个人。这可能是因为其他人不知道coc,或者因为其他人不认为它们是必要的或有用的。
Certificates of confidentiality (COCs) are a tool to protect researchers from being compelled to release identifying information about their subjects. Whereas institutional review board (IRB) review and informed consent procedures are mandatory tools to protect human subjects, COCs are voluntary. There are limited data about who procures COCs and why, and whether they are useful. Three Institutes of the National Institutes of Health (NIH) provided data on 114 research projects that had received COCs. Eighty-three researchers had procured a single COC and 11 researchers had procured 31 COCs. One hundred and four (91%) of the COCs were obtained by researchers at academic sites, and 17 institutions collectively accounted for 82 COCs. The most commonly cited sources of information about COCs came from colleagues (n = 18, 35%) and previous experience (n = 17, 33%). The most common reasons for procuring a COC were that the research involved genetics (n = 28, 54%), the research could lead to social stigmatization or discrimination (n = 22, 42%), or the research could damage an individual's financial standing, employability, or reputation (n = 21, 40%). These findings show that COCs are often congregated within institutions and by particular individuals. This may be because others are unaware of COCs or because others do not believe they are necessary or useful.