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Lawful disclosure of administrative data for research purposes in the UK
Journal of Data Protection & Privacy,
2
(3),
264-277
(2019)
Abstract
The UK government funded the Administrative Data Research Network (ADRN) with the explicit aim of making administrative data available for research; however, the legal framework for doing so is complex and the basis for disclosing these data to third party researchers is not straightforward. This paper critically analyses the legal framework for public authorities to disclose administrative data for the purposes of research, which will change significantly with the introduction of the General Data Protection Regulation (GDPR) and the UK Digital Economy Act 2017 (DEA). Our practical assessment of the new statutory power under the DEA for public authorities to disclose non-identifiable administrative data for research purposes highlights the challenges that may remain for researchers requiring access to linked administrative and health and adult social care data. Our review, in this paper, of the existing regimes for research using linked data is therefore necessary and useful for researchers, public authorities and data protection advisers.
Keywords: data protection; administrative data; data processing; public authority; research
The full article is available to subscribers to the journal.
Author's Biography
Jessica Bell is a research fellow at the Melbourne Law School and HeLEX. Jessica holds a PhD from the University of Sheffield and an MA in biotechnology, law and ethics from the same institution. Jessica has been a visiting researcher at the Brocher Foundation, Geneva; the Centre for Science, Technology, Medicine and Society, UC Berkeley; and the Centre of Genomics and Policy, McGill University, Montreal. Her research focuses on the legal and governance issues that arise from the establishment of large-scale research infrastructures such as biobanks and data-sharing networks, particularly data protection and privacy.
Susan E Wallace All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
Miranda Mourby All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
Heather Gowans All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
Stergios Aidinlis All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
Hannah Smith All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
Jane Kaye All contributing authors are researchers at the HeLEX Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. HeLEX was founded in 2009 by Professor Jane Kaye (director) and specialises in law, governance and best practice for emerging technologies in health. Professor Jane Kaye is Professor of Health Law at Melbourne Law School, University of Melbourne, and the University of Oxford.
