The destruction of the 'Windrush' disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research.
The destruction of the 'Windrush' disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research.
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DOI：
10.12688/wellcomeopenres.14796.1
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发表时间：
2018
影响因子：
--
通讯作者：
Park A
中科院分区：
文献类型：
--
作者：
Boyd A;Woollard M;Macleod J;Park A
历史记录和已完成研究的研究数据库有可能建立新的研究研究，或为评估长期健康和社会结果的后续研究提供信息。然而，由于对数据保护立法和研究道德的误解，这些记录有被销毁的风险。最近Windrush入境卡的销毁，可能成为一项回溯性队列研究的基础，说明了这一风险。随着欧洲各地的组织向欧盟一般数据保护条例(GDPR)过渡，由于如何遵守复杂的新规则的不确定性，以及GDPR要求数据所有者对其数据进行编目并制定数据保留和销毁规则，这种风险正在放大。这些因素的结合表明，存在一种新的有意义的风险，即具有重要科学意义的历史记录将被销毁，尽管GDPR为保存历史记录并将其重新用于公共利益的研究提供了明确的法律基础。这封信描述了这种风险；详细说明了允许保留和重新利用这些数据的法律基础；就如何降低这种风险提出了建议；最后鼓励研究和研究活跃的临床社区联系他们的“数据保护官”，以促进历史记录的安全保存。
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.