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

Andy Boyd,John Macleod,Matthew Woollard,Alison Park

doi:10.12688/wellcomeopenres.14796.1

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.

Highlights

The UK state mistreatment of the ‘Windrush generation’ who migrated to the UK from the West Indies during the 1950s and 60s is a public scandal, and illustrates a meaningfulemerging risk to longitudinal research
The recent destruction of the Windrush disembarkation cards, which potentially could have formed the basis of a retrospective cohort study, illustrates this risk
Aside from their utility to demonstrate citizenship, these disembarkation cards, a record of ~0.5 million migrants from a defined geographical location arriving in Britain following the end of the Second World War[3], could have been the starting point for a retrospective cohort study

Summary

Introduction

The UK state mistreatment of the ‘Windrush generation’ who migrated to the UK from the West Indies during the 1950s and 60s is a public scandal, and illustrates a meaningful (re)emerging risk to longitudinal research. In this article we reflect on the value of repurposing historical records or historical research databases in long-term outcome studies; and assess the legal basis for retaining such records and repurposing them in this manner under the new EU General Data Protection Regulation (GDPR). Whether from sincere attempts to comply with new legislation, ignorance of historical data’s future research potential, or from pressure to clear shelf/ server space, it is likely that historical records—equivalent to those used to establish the Boyd Orr, Lothian, Hertfordshire and Helsinki cohorts—are under considerable threat of destruction To counter this threat, it is important that the ethico-legal basis for retaining these records is clarified and communicated: here, we illustrate a case using UK Data Protection law as an example.

Conclusion

Peach C

10. Mandemakers K

15. National Records of Scotland: Data Protection Code of Practice

19. Information Commissioner’s Office

Kershaw R