Big data, privacy and COVID-19 – learning from humanitarian expertise in data protection

Abstract

The COVID-19 pandemic leads governments around the world to resort to tracking technology and other data-driven tools in order to monitor and curb the spread of SARS-CoV-2. Such large-scale incursion into privacy and data protection is unthinkable during times of normalcy. However, in times of a pandemic the use of location data provided by telecom operators and/or technology companies becomes a viable option. Importantly, legal regulations hardly protect people’s privacy against governmental and corporate misuse. Established privacy regimes are focused on individual consent, and most human rights treaties know derogations from privacy and data protection norms for states of emergency. This leaves little safeguards nor remedies to guarantee individual and collective autonomy. However, the challenge of responsible data use during a crisis is not novel. The humanitarian sector has more than a decade of experience to offer. International organisations and humanitarian actors have developed detailed guidelines on how to use data responsibly under extreme circumstances. This article briefly addresses the legal gap of data protection and privacy during this global crisis. Then it outlines the state of the art in humanitarian practice and academia on data protection and data responsibility during crisis.

Anonymization Techniques for Privacy Preserving Data Publishing: A Comprehensive Survey

“…Author et al: Preparation of Papers for IEEE TRANSACTIONS and JOURNALS violations in healthcare sector related to companies and individuals have doubled [287]. Furthermore, the privacy violations in post COVID-19's era are expected to increase as many companies have collected the multifact data about the people lifestyles [288]- [290]. Considering the necessity of users' privacy preservation, the ethical aspects during and after COVID-19's era must be carefully observed and addressed [291]- [297].…”

Infectious diseases epidemiology, quantitative methodology, and clinical research in the midst of the COVID-19 pandemic: Perspective from a European country

“…These provisions, together with the European Clinical Trials Regulation and the corresponding Belgian law, provide a solid base for the scientific use and data sharing of medical and personal data [ 37 ]. As argued by other authors [ 143 ] the COVID-19 pandemic is not a free pass to use these data without any safeguards. The pandemic actually has been an opportunity to show that the principle underlying GDPR can actually be an advantage for data-driven research.…”

A Case Study on the Development of a Data Privacy Management Solution Based on Patient Information

“…Concerning the relationship between data privacy and its use in situations such as the COVID-19 crisis, Zwitter et al [15] deals with the basic concept of human rights that relates data privacy with the need to use certain information, such as someone's location. The authors mention features of applications developed by China, South Korea, and the United States that use tracking techniques to indicate close contact with virus carriers or identify specific individuals or groups' movements.…”

“…Zwitter and Gstrein [15] say that data collection and its use must be done concerning the principle of proportionality and individual's interests. Their work is based on data collected over the individual's location and genetic data.…”

“…This topic is the central part of their work. Zwitter and Gstrein [ 15 ] mention mobile devices, although their concern focuses on apps and location data, not the device itself. Islam et al [ 17 ] treat devices like mobile, connected to the Internet through IoT providers.…”