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首页> 外文期刊>Biopreservation and biobanking >What Does Anonymization Mean? DataSHIELD and the Need for Consensus on Anonymization Terminology
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What Does Anonymization Mean? DataSHIELD and the Need for Consensus on Anonymization Terminology

机译：匿名意味着什么？ DataSHIELD和匿名术语共识的需求

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摘要

Anonymization is a recognized process by which identifiers can be removed from identifiable data to protect an individual's confidentiality and is used as a standard practice when sharing data in biomedical research. However, a plethora of terms, such as coding, pseudonymization, unlinked, and deidentified, have been and continue to be used, leading to confusion and uncertainty. This article shows that this is a historic problem and argues that such continuing uncertainty regarding the levels of protection given to data risks damaging initiatives designed to assist researchers conducting cross-national studies and sharing data internationally. DataSHIELD and the creation of a legal template are used as examples of initiatives that rely on anonymization, but where the inconsistency in terminology could hinder progress. More broadly, this article argues that there is a real possibility that there could be possible damage to the public's trust in research and the institutions that carry it out by relying on vague notions of the anonymization process. Research participants whose lack of clear understanding of the research process is compensated for by trusting those carrying out the research may have that trust damaged if the level of protection given to their data does not match their expectations. One step toward ensuring understanding between parties would be consistent use of clearly defined terminology used internationally, so that all those involved are clear on the level of identifiability of any particular set of data and, therefore, how that data can be accessed and shared.
机译：匿名化是一种公认​​的过程，通过该过程可以从可识别的数据中删除标识符以保护个人的机密性，并在生物医学研究中共享数据时用作标准做法。但是，已经使用并继续使用过多的术语，例如编码，假名，未链接和不标识的术语，从而导致混乱和不确定性。本文表明这是一个历史性问题，并指出，对数据保护水平的持续不确定性可能损害旨在帮助研究人员进行跨国研究和国际共享数据的计划。 DataSHIELD和法律模板的创建被用作依赖匿名化的计划的示例，但术语不一致会阻碍进展。更广泛地说，本文认为，依靠匿名过程的模糊概念，很可能会损害公众对研究和开展研究的机构的信任。对研究过程缺乏清晰了解的研究参与者可以通过相信进行研究的人来弥补，如果对他们的数据提供的保护水平与他们的期望不符，那么他们的信任就可能受到损害。确保各方之间理解的一个步骤是一贯使用国际上使用的明确定义的术语，以便所有相关人员在任何特定数据集的可识别性级别以及因此如何访问和共享这些数据上都是清楚的。

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