社会学健康研究中的数据保护:关于新监管环境挑战的批判性叙述

IF 1.2 3区 社会学 Q3 SOCIOLOGY
Hélder Raposo, Sara Melo, Catarina Egreja
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引用次数: 0

摘要

最近实施的《通用数据保护条例》(GDPR)建立了一套加强个人数据保护的正式要求,即关于研究参与者数据的收集、处理和传播的要求。随着这一新的法律条款在欧洲层面的应用,新的限制类型正在出现,其性质和范围加剧了对隐私和科学自由的要求之间的紧张关系。在本文中,我们参考了一项正在葡萄牙进行的健康社会学领域的研究,该研究涉及面临高性能压力的专业人员的药物消费。我们的主要目标是识别和分析在研究过程中面临的监管挑战的影响,以及研究人员如何管理和克服这些挑战。我们提出了一种批判性的叙述,揭示了所采取的选择的性质,同时也评估了对研究运作的实际影响。我们最后指出,尽管GDPR的应用可能带来好处,但有关个人数据保护的新要求可能会超越科学研究的伦理原则,并加强对开展研究的监管限制。在有关的研究中,重要的实际影响是间接接触参与者,参与者的坚持是一个更耗时的过程,以及招募不同阶段之间的时间差异。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Data Protection in Sociological Health Research: A Critical Narrative about the Challenges of a New Regulatory Landscape
The recent implementation of the General Data Protection Regulation (GDPR) establishes a set of formal requirements that reinforce personal data protection, namely, those concerning the collection, treatment, and dissemination of data on research participants. With the application of this new legal provision at the European level, new types of restrictions are emerging, whose nature and reach intensify the tension between demands for privacy and scientific freedom in research. In this article, we take as a reference an ongoing research taking place in Portugal, in the field of Sociology of Health, concerning the consumption of medicines by professionals exposed to high-performance pressure. Our main objective is to identify and analyse the implications of regulatory challenges faced in the research process and how the researchers managed and overcame them. We present a critical narrative that sheds light on the nature of the choices taken while also assessing the practical implications for the operationalisation of the research. We conclude by noting that, despite the benefits that may flow from the application of GDPR, the new requirements regarding the protection of personal data may override the ethical principles of scientific research and strengthen regulatory restrictions on conducting research. In the research concerned, the significant practical implications were indirect access to participants, a more time-consuming process in terms of participant adherence and a temporal discrepancy between the different stages of recruitment.
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来源期刊
CiteScore
2.80
自引率
6.20%
发文量
67
期刊介绍: Sociological Research Online has been published quarterly online since March 1996. Articles published in the journal are peer-reviewed by a distinguished Editorial Board and qualify for inclusion in the UK Research Assessment Exercise. Sociological Research Online was established under the Electronic Libraries Programme (eLib). When funding ceased in September 1998, Sociological Research Online introduced institutional subscriptions in order to be able to continue publishing high quality sociology. The journal is still available without charge to individuals accessing it from non-institutional networks.
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