Abstract

The COVID-19 pandemic has underscored the need for new ways of thinking about data protection. This is especially so in the case of health research with children. The responsible use of children’s data plays a key role in promoting children’s well-being and securing their right to health and to privacy. In this article, we contend that a contextual approach that appropriately balances children’s legal and moral rights and interests is needed when thinking about data protection issues with children. We examine three issues in health research through a child-focused lens: consent to data processing, data retention, and data protection impact assessments. We show that these issues present distinctive concerns for children and that the General Data Protection Regulation provides few bright-line rules. We contend that there is an opportunity for creative approaches to children’s data protection when child-specific principles, such as the best interests of the child and the child’s right to be heard, are put into dialogue with the structure and logic of data protection law.

Highlights

  • It is axiomatic that children are vulnerable

  • We examine children’s rights to privacy and data protection under the Convention on the Rights of the Child (CRC; 1989) and the General Data Protection Regulation (GDPR; 2016)

  • We examine three specific issues for children and COVID-19 research: consent, data retention, and data protection impact assessments

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Summary

Introduction

It is axiomatic that children are vulnerable. Without fully formed cognitive capacities and the lack of life experience, children need help from their parents, civil society, and the State to look after their best interests. We contend that the new ways of thinking about data protection issues with children in the health research context are overdue. We examine three specific issues for children and COVID-19 research: consent, data retention, and data protection impact assessments.

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