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The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research

Boyd, Andy and Woollard, Matthew and Macleod, John and Park, Alison (2018) 'The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research.' Wellcome Open Research, 2018 (3). p. 112. ISSN 2398-502X

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Historical records and the research databases of completed studies have the potential either to establish new research studies or to inform follow-up studies assessing long-term health and social outcomes. Yet, such records are at risk of destruction resulting from misconceptions about data protection legislation and research ethics. The recent destruction of the Windrush disembarkation cards, which potentially could have formed the basis of a retrospective cohort study, illustrates this risk. As organisations across Europe transition to the EU General Data Protection Regulation (GDPR), this risk is being amplified due to uncertainty as to how to comply with complex new rules, and the requirement under GDPR that data owners catalogue their data and set data retention and destruction rules. The combination of these factors suggests there is a new meaningful risk that scientifically important historical records will be destroyed, despite the fact that GDPR provides a clear legal basis to hold historical records and to repurpose them for research for the public good. This letter describes this risk; details the legal basis enabling the retention and repurposing of these data; makes recommendations as to how to alleviate this risk; and finally encourages the research and research-active clinical community to contact their ‘Data Protection Officers’ to promote safe-keeping of historical records.

Item Type: Article
Uncontrolled Keywords: GDPR; Windrush.; data protection; data repurpose; data retention; follow-up; research archive; retrospective cohort study
Subjects: C Auxiliary Sciences of History > CD Diplomatics. Archives. Seals > CD921 Archives
J Political Science > JV Colonies and colonization. Emigration and immigration. International migration
Z Bibliography. Library Science. Information Resources > ZA Information resources > ZA4050 Electronic information resources
Divisions: Faculty of Social Sciences
Faculty of Social Sciences > UK Data Archive
SWORD Depositor: Elements
Depositing User: Elements
Date Deposited: 03 Oct 2018 10:12
Last Modified: 06 Jan 2022 13:54

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