@article{167538f3693c4649831cab6f16bbc82b,
title = "Purpose definition as a crucial step for determining the legal basis under the GDPR: Implications for scientific research",
abstract = "The General Data Protection Regulation (GDPR) of the European Union, which became applicable in 2018, contains a new accountability principle. Under this principle, controllers (ie parties determining the purposes and the means of the processing of personal data) are responsible for ensuring and demonstrating the overall compliance with the GDPR. However, interpretive uncertainties of the GDPR mean that controllers must exercise considerable judgement in designing and implementing an appropriate compliance strategy, making GDPR compliance both complex and resource-intensive. In this article, we provide conceptual clarity around GDPR compliance with respect to one core aspect of the law: the determination and relevance of the purpose of personal data processing. We derive from the GDPR{\textquoteright}s text concrete requirements for purpose specification, which we subsequently apply to the area of secondary use of personal data for scientific research. We offer guidance for correctly specifying purposes of data processing under different research scenarios. To illustrate the practical necessity of purpose specification for GDPR compliance, we then show how our proposed approach can enable controllers to meet their compliance obligations, using the example of the overarching GDPR principle of lawfulness to highlight the relevance of purpose specification for the identification of a suitable legal basis.",
keywords = "data protection, GDPR, lawfulness, legal basis, purpose specification, scientific research",
author = "Regina Becker and Davit Chokoshvili and Adrian Thorogood and Dove, \{Edward S.\} and Fruzsina Moln{\'a}r-G{\'a}bor and Alexandra Ziaka and Olga Tzortzatou-Nanopoulou and Giovanni Comand{\'e}",
note = "Funding Information: Work of FMG was supported by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) — NFDI 1/1 {\textquoteleft}GHGA — German Human Genome-Phenome Archive{\textquoteright} and by the German Federal Ministry of Education and Research, Project TrustDNA (Grant Number: 16DTM108A). ACKNOWLEDGEMENTS Funding Information: Work of RB was supported by the European Union{\textquoteright}s Horizon 2020 research and innovation programme Coordination and Support Action {\textquoteleft}Beyond 1 Million Genomes (B1MG){\textquoteright} (grant agreement no. 951724) and the European Union{\textquoteright}s Digital Europe Programme project {\textquoteleft}Genomic Data Infrastructure (GDI){\textquoteright} (grant agreement no. 101081813). Funding Information: Work of DC was supported by the European Union{\textquoteright}s Horizon 2020 research and innovation programme Coordination and Support Action HealthyCloud (grant agreement no. 965345) and the Innovative Medicines Initiative 2 Joint Undertaking Research and Innovation Action European Platform for Neurodegenerative Diseases (EPND, grant agreement no. 101034344). Publisher Copyright: {\textcopyright} 2024 The Author(s). Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School.",
year = "2024",
month = feb,
day = "1",
doi = "10.1093/jlb/lsae001",
language = "English",
volume = "11",
pages = "1--30",
journal = "Journal of Law and the Biosciences",
issn = "2053-9711",
publisher = "Oxford University Press",
number = "1",
}