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健康研究与1998年《数据保护法》。

Health research and the Data Protection Act 1998.

作者信息

Boyd Phil

机构信息

Information Commissioner's Office, Wilmslow, Cheshire, UK.

出版信息

J Health Serv Res Policy. 2003 Jul;8 Suppl 1:S1:24-7. doi: 10.1258/135581903766468846.

Abstract

The 1998 Data Protection Act in the UK largely restates existing good practice: individuals have a right to know what data are held about them and why; and those processing data have a duty to proceed with fairness and transparency, maintain high data quality and keep data secure. Some health researchers have criticised the Act, seeing it as a legal minefield, unnecessary bureaucracy and interference from the European Union. This is largely based on misconceptions. Recent guidance from the Information Commissioner aims to assist researchers by advising how legal requirements can be met through anonymisation of data, attention to data-processing methods and fair collection of data. The Act provides a clear framework of rights and responsibilities that should be embraced with enthusiasm rather than with the reluctance of a person forced to carry out a meaningless chore.

摘要

英国1998年的《数据保护法》在很大程度上重申了现有的良好做法:个人有权知道持有关于他们的哪些数据以及原因;而处理数据的人有责任公平、透明地行事,保持高数据质量并确保数据安全。一些健康研究人员批评了该法案,将其视为一个法律雷区、不必要的官僚作风以及来自欧盟的干涉。这在很大程度上是基于误解。信息专员最近的指导旨在通过建议如何通过数据匿名化、关注数据处理方法和公平收集数据来满足法律要求,从而帮助研究人员。该法案提供了一个明确的权利和责任框架,应该热情地接受,而不是像被迫执行无意义琐事的人那样不情愿。

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