Big Tech platforms in health research

Re-purposing big data governance in light of the General Data Protection Regulation's research exemption

Bibliographic Data

ID5260528
AuthorsLuisa Marelli (0000-0002-3960-0033, University of Milan, corresponding author), G Testa (0000-0002-9104-0918, University of Milan), Ine Van Hoyweghen (0000-0002-9402-2918, KU Leuven)
Year2021
Volume8
Issue1
Publication date2021-01-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueBig Data & Society (JOURNAL)
Journal identifiersISSN: 2053-9517 • E-ISSN: 2053-9517
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/20539517211018783
OpenAlexW3168527542
LanguageEN
Citations received6
References cited46

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

Big data · Business · Corporate governance · Data governance · Data Protection Act 1998 · Law and economics · Political science · Public relations · Sociology · Unintended consequences · Computer Science · Ethics and Social Impacts of AI · Ethics in Clinical Research · Law · Privacy-Preserving Technologies in Data · Public Administration · Marketing