Boyd, A;
Woollard, M;
Macleod, J;
Park, A;
(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
, 3
(112)
10.12688/wellcomeopenres.14796.1.
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Abstract
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.
| Type: | Article |
|---|---|
| Title: | The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.12688/wellcomeopenres.14796.1 |
| Publisher version: | https://doi.org/10.12688/wellcomeopenres.14796.1 |
| Language: | English |
| Additional information: | This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | GDPR, data protection, research archive, data retention, data repurpose, retrospective cohort study, follow-up, Windrush. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10057797 |
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