On 2 December 2020, the Brussels Privacy Symposium will focus on Research and Data protection. The COVID-19 pandemic has brought to the fore the crucial role that data collection, analysis, sharing, and dissemination play for governments, academic institutions, and private sector businesses racing to advance research to help contain, mitigate and remedy the disease. It also illustrates that data protection safeguards are essential to build public trust for the swift adoption of data-based solutions that respect fundamental rights. But the effect of privacy and data protection laws on scientific research extends beyond the pandemic and healthcare. The interactions between data protection and research are complex, with privacy and data protection enhancing individuals’ trust and ensuring respect of fundamental rights and ethical standards, while at the same time creating friction for data collection and sharing across organizations and borders.
The EU General Data Protection Regulation (GDPR) provides a tailored framework for processing personal data for research purposes, which allows for differences in implementation at the Member State level and presents questions about the interpretation and implementation of issues such as the scope of research; repurposing personal data - including sensitive data; access of researchers to corporate databases; sharing data across international borders; and the use of data protection enhancing techniques such as key coding and pseudonymization. Other legal frameworks, including emerging US privacy laws, call for the creation of ethical review boards for data research in organizations, including businesses that have not traditionally adhered to ethical standards such as the Common Rule. In this year’s Brussels Privacy Symposium (which will take place online), leading ethicists, scientists, lawyers and policymakers discuss the present and future of data protection in the context of scientific data based research under the GDPR.
For more information and registration, see here.