Sariyar Murat, Schlünder Irene
1 Institute of Pathology, Charité-University Medicine Berlin , Berlin, Germany .
2 TMF (Technologie- und Methodenplattform e.V.) , Berlin, Germany .
Biopreserv Biobank. 2016 Oct;14(5):367-374. doi: 10.1089/bio.2015.0100. Epub 2016 Apr 22.
Sharing data in biomedical contexts has become increasingly relevant, but privacy concerns set constraints for free sharing of individual-level data. Data protection law protects only data relating to an identifiable individual, whereas "anonymous" data are free to be used by everybody. Usage of many terms related to anonymization is often not consistent among different domains such as statistics and law. The crucial term "identification" seems especially hard to define, since its definition presupposes the existence of identifying characteristics, leading to some circularity. In this article, we present a discussion of important terms based on a legal perspective that it is outlined before we present issues related to the usage of terms such as unique "identifiers," "quasi-identifiers," and "sensitive attributes." Based on these terms, we have tried to circumvent a circular definition for the term "identification" by making two decisions: first, deciding which (natural) identifier should stand for the individual; second, deciding how to recognize the individual. In addition, we provide an overview of anonymization techniques/methods for preventing re-identification. The discussion of basic notions related to anonymization shows that there is some work to be done in order to achieve a mutual understanding between legal and technical experts concerning some of these notions. Using a dialectical definition process in order to merge technical and legal perspectives on terms seems important for enhancing mutual understanding.
在生物医学领域共享数据变得越来越重要,但隐私问题对个人层面数据的自由共享设置了限制。数据保护法仅保护与可识别个人相关的数据,而“匿名”数据则可由所有人自由使用。在统计和法律等不同领域,许多与匿名化相关的术语用法往往不一致。关键术语“识别”似乎特别难以定义,因为其定义预设了识别特征的存在,从而导致某种循环。在本文中,我们基于法律视角对重要术语进行了讨论,在阐述与“唯一标识符”“准标识符”和“敏感属性”等术语的使用相关问题之前,先对该法律视角进行了概述。基于这些术语,我们试图通过做出两个决定来规避“识别”一词的循环定义:第一,决定哪个(自然)标识符应代表个人;第二,决定如何识别个人。此外,我们还概述了防止重新识别的匿名化技术/方法。对与匿名化相关的基本概念的讨论表明,为了使法律专家和技术专家就其中一些概念达成相互理解,仍有一些工作要做。使用辩证定义过程来融合术语的技术和法律视角,对于增进相互理解似乎很重要。