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Big Tech platforms in health research: Re-purposing big data governance in light of the General Data Protection Regulation’s research exemption
Big Data & Society ( IF 8.731 ) Pub Date : 2021-05-30 , DOI: 10.1177/20539517211018783
Luca Marelli 1, 2, 3 , Giuseppe Testa 3, 4, 5 , Ine Van Hoyweghen 1, 6
Affiliation  

The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The General Data Protection Regulation upholds a rather flexible regime for scientific research through a number of derogations to otherwise stricter data protection requirements, while providing a very broad interpretation of the notion of “scientific research”. Precisely the breadth of these exemptions combined with the ample scope of this notion could provide unintended leeway to the health data processing activities of Big Tech platforms, which have not been immune from carrying out privacy-infringing and socially disruptive practices in the health domain. We thus discuss further finer-grained demarcations to be traced within the broadly construed notion of scientific research, geared to implementing use-based data governance frameworks that distinguish health research activities that should benefit from a facilitated data protection regime from those that should not. We conclude that a “re-purposing” of big data governance approaches in health research is needed if European nations are to promote research activities within a framework of high safeguards for both individual citizens and society.



中文翻译:

健康研究中的大科技平台:根据《通用数据保护条例》的研究豁免重新调整大数据治理

由大型科技公司运营的全球数字健康平台行业的出现及其与学术和药物研究网络的日益纠缠,对当前数据治理模式、监管和法律框架的能力提出了紧迫的问题,以保障健康的可持续性研究生态系统。在本文中,我们将注意力集中在欧洲通用数据保护条例在规范大型科技平台在健康研究中的潜在破坏性参与方面面临的挑战。《通用数据保护条例》通过一系列减损本来对严格的数据保护要求的主张,维护了相当灵活的科学研究体制,同时对“科学研究”的概念提供了非常广泛的解释。正是这些豁免的广度与这一概念的广泛范围相结合,可能为大型科技平台的健康数据处理活动提供意外的余地,这些平台也未能幸免于在健康领域进行侵犯隐私和破坏社会的做法。因此,我们讨论了在广义的科学研究概念中进行更细粒度的划分,旨在实施基于使用的数据治理框架,以区分应该受益于便利数据保护制度的健康研究活动和不应该受益的活动。我们得出的结论是,如果欧洲国家要在为个人和社会提供高度保障的框架内促进研究活动,就需要在健康研究中“重新利用”大数据治理方法。

更新日期:2021-05-30
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