The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved]
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 protecti...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wellcome
2018-09-01
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| Series: | Wellcome Open Research |
| Online Access: | https://wellcomeopenresearch.org/articles/3-112/v1 |
| _version_ | 1811245616251011072 |
|---|---|
| author | Andy Boyd Matthew Woollard John Macleod Alison Park |
| author_facet | Andy Boyd Matthew Woollard John Macleod Alison Park |
| author_sort | Andy Boyd |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-12T14:42:01Z |
| format | Article |
| id | doaj.art-d6d5e60afe55466ea03c194e433a0f20 |
| institution | Directory Open Access Journal |
| issn | 2398-502X |
| language | English |
| last_indexed | 2024-04-12T14:42:01Z |
| publishDate | 2018-09-01 |
| publisher | Wellcome |
| record_format | Article |
| series | Wellcome Open Research |
| spelling | doaj.art-d6d5e60afe55466ea03c194e433a0f202022-12-22T03:28:49ZengWellcomeWellcome Open Research2398-502X2018-09-01310.12688/wellcomeopenres.14796.116124The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved]Andy Boyd0Matthew Woollard1John Macleod2Alison Park3ALSPAC, University of Bristol, Bristol, BS8 2BN, UKUK Data Archive, University of Essex, Colchester, CO4 3SQ, UKPopulation Health Science, University of Bristol, Bristol, BS8 2BN, UKCLOSER, UCL Institute of Education, London, WC1H 0NU, UKHistorical 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.https://wellcomeopenresearch.org/articles/3-112/v1 |
| spellingShingle | Andy Boyd Matthew Woollard John Macleod Alison Park The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved] Wellcome Open Research |
| 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 [version 1; referees: 2 approved] |
| title_full | The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved] |
| title_fullStr | The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved] |
| title_full_unstemmed | The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved] |
| title_short | The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research [version 1; referees: 2 approved] |
| title_sort | destruction of the windrush disembarkation cards a lost opportunity and the re emergence of data protection regulation as a threat to longitudinal research version 1 referees 2 approved |
| url | https://wellcomeopenresearch.org/articles/3-112/v1 |
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