Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption

27 Pages Posted: 9 Jan 2021 Last revised: 24 May 2021

See all articles by Luca Marelli

Luca Marelli

Life Sciences & Society Lab, Centre for Sociological Research, KU Leuven; Department of Medical Biotechnologies and Translational Medicine, University of Milan; Department of Experimental Oncology, European Institute of Oncology IRCCS

Giuseppe Testa

European Institute of Oncology (IEO) IRCCS - Laboratory of Stem Cell Epigenetics; University of Milan - Department of Oncology and Hemato‐Oncology (DIPO)

Ine Van Hoyweghen

Life Sciences & Society Lab, Centre for Sociological Research, KU Leuven

Date Written: March 1, 2021

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, 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 towards the challenges faced by the European General Data Protection Regulation (GDPR) in regulating the potentially disruptive engagement of Big Tech platforms in health research. The GDPR 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.

Keywords: GDPR, Research Exemption, Big Tech platforms, Data Governance

Suggested Citation

Marelli, Luca and Testa, Giuseppe and Van Hoyweghen, Ine, Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption (March 1, 2021). Available at SSRN: https://ssrn.com/abstract=3712168 or http://dx.doi.org/10.2139/ssrn.3712168

Luca Marelli (Contact Author)

Life Sciences & Society Lab, Centre for Sociological Research, KU Leuven ( email )

Oude Markt 13
Leuven, Vlaams-Brabant 3000
Belgium

Department of Medical Biotechnologies and Translational Medicine, University of Milan ( email )

Via Festa del Perdono, 7
Milan, 20122
Italy

Department of Experimental Oncology, European Institute of Oncology IRCCS ( email )

via Adamello 16
Milano, 20139
Italy

Giuseppe Testa

European Institute of Oncology (IEO) IRCCS - Laboratory of Stem Cell Epigenetics ( email )

via Adamello 16
Milano, 20139
Italy

University of Milan - Department of Oncology and Hemato‐Oncology (DIPO) ( email )

Via Festa del Perdono 7
Milano, 20122
Italy

Ine Van Hoyweghen

Life Sciences & Society Lab, Centre for Sociological Research, KU Leuven ( email )

Oude Markt 13
Leuven, Vlaams-Brabant 3000
Belgium

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