Cooper Zachary N, Nelson Robert M, Ross Lainie Friedman
The College, University of Chicago, Chicago, IL 60637, USA.
Genet Test. 2004 Summer;8(2):214-20. doi: 10.1089/gte.2004.8.214.
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.
保密证书（COC）是一种保护研究人员不被强制披露其研究对象身份信息的工具。虽然机构审查委员会（IRB）审查和知情同意程序是保护人类受试者的强制性工具，但保密证书是自愿性的。关于谁获取保密证书、为何获取以及它们是否有用的数据有限。美国国立卫生研究院（NIH）的三个研究所提供了114个已获得保密证书的研究项目的数据。83名研究人员获得了一份保密证书，11名研究人员获得了31份保密证书。其中104份（91%）保密证书由学术机构的研究人员获得，17个机构共获得了82份保密证书。关于保密证书最常被提及的信息来源是同事（n = 18，35%）和以往经验（n = 17，33%）。获取保密证书最常见的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经济状况、就业能力或声誉（n = 21，40%）。这些发现表明，保密证书往往集中在某些机构和特定个人手中。这可能是因为其他人不了解保密证书，或者因为其他人认为它们没有必要或没有用处。
