The Administrative Data Research Centre Scotland: A Scoping Report on the Legal & Ethical Issues Arising from Access & Linkage of Administrative Data
62 Pages Posted: 28 Aug 2014 Last revised: 21 Nov 2014
Date Written: August 27, 2014
This initial scoping report outlines the original research to be undertaken for the legal work package of the Economic and Social Research Council (ESRC) funded Administrative Data Research Centre-Scotland (ADRC-S), by Professor Graeme Laurie and Ms Leslie Stevens based at the University of Edinburgh, School of Law and J Kenyon Mason Institute for Medicine, Life Sciences and the Law. The report provides an overview of the regulatory context in which administrative data linkages currently operate in Scotland, highlighting the crucial legal and ethical issues which arise from the current mixed legal landscape under which administrative data linkages operate. Adopting an approach that takes into account both the risks and the benefits that can be achieved through administrative data linkage research in the public interest, Laurie and Stevens argue for a principles-based approach to the governance of administrative data used for research purposes. By looking to established best practice in the field of data linkages in the health sector, and most notably the Good Governance Framework developed for the Scottish Health Informatics Programme (SHIP), the paper argues for a approach that will determine which principles can operate in a framework of robust and proportionate governance of administrative data linkages in Scotland. This is the first in a series of papers for the legal work package of the ESRC-funded ADRC-S. Subsequent papers will focus on particular research questions of the legal work package, notably the adaption of a principles based approach to the governance of administrative data; use of historical administrative data and the risks and benefits of commercial involvement in research.
Keywords: Legal, administrative data, data protection, consent, anonymisation, governance, principles-based regulation
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