BioRN: Bioethics (Topic)最新文献

筛选
英文 中文
Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption 健康研究中的大技术平台:根据GDPR的研究豁免重新利用大数据治理
BioRN: Bioethics (Topic) Pub Date : 2020-07-30 DOI: 10.2139/ssrn.3712168
L. Marelli, G. Testa, I. van Hoyweghen
{"title":"Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption","authors":"L. Marelli, G. Testa, I. van Hoyweghen","doi":"10.2139/ssrn.3712168","DOIUrl":"https://doi.org/10.2139/ssrn.3712168","url":null,"abstract":"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, have raised increasingly 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 towards the challenges faced by the General Data Protection Regulation (GDPR) in Europe to regulate the potentially disruptive engagement of Big Tech platforms in health research. The GDPR ushers in a rather flexible regime for scientific research through a number of exemptions to otherwise stricter data protection requirements, while providing a very broad interpretation of the notion of ‘scientific research’. In fact, we contend, the breadth of these exemptions combined with the ample scope of this notion can open up a ‘regulatory backdoor’ that could provide unintended leeway to a number of privacy-infringing and socially disruptive practices carried out by Big Tech platforms in the health domain. Accordingly, we propose further finer-grained distinctions to be traced within this broadly construed framing of scientific research, geared to the implementation of use-based data governance frameworks that demarcate health research activities to be carried out within a facilitated data protection regime from those to subject to more stringent requirements. On the basis of our analysis, it is our contention 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.","PeriodicalId":326237,"journal":{"name":"BioRN: Bioethics (Topic)","volume":"18 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127661801","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
0
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
相关产品
×
本文献相关产品
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信