Mass-scale Public-private Data Sharing Collaborations in an Emergency: The Role of the General Data Protection Regulation

Abstract

The COVID-19 pandemic posed numerous ethical and legal dilemmas worldwide, particularly concerning the delicate balance between fundamental rights and the exigency of addressing the health crisis promptly. Governments globally implemented various degrees of restrictions on individual rights to tackle the public health emergency, also leading to extensive utilization of health-related data for research and public health initiatives. Notably, the agreement forged in January 2021 between the Israeli Ministry of Health (MoH) and Pfizer epitomizes this trend, where epidemiological data exchange was exchanged for prioritized access to COVID-19 vaccine doses. This paper scrutinizes the data protection law implications of such agreements, using the Israel-Pfizer pact as a case study from a European perspective. Through an in-depth analysis of the General Data Protection Regulation (GDPR) frameworks concerning data processing for scientific research, in the public interest, and for public health, this study explores the extent to which the GDPR permits government-to-business (G2B) data sharing during emergencies and safeguards data subjects’ rights. While uncertainties persist within the GDPR framework, particularly regarding the definitions of personal data, research, and public interest, the GDPR provides mechanisms to mitigate risks associated with mass-scale G2B data transfers without individuals’ consent and oversight. At the same time, a clearer governance framework and a more harmonised regulation of observational studies across the EU could contribute to fostering desirable public-private data-sharing collaborations.

Presenters

Andrea Parziale
Assistant Professor, Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Maastricht University, Limburg, Netherlands

Details

Presentation Type

Paper Presentation in a Themed Session

Theme

2024 Special Focus—Health for Democracy, Democracy for Health

KEYWORDS

Data Sharing, Government-To-Business, Public Health, Public Interest, Research, Surveillance

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