Horner J S
Centre for Professioal Ethics, University of Central Lancashire, Preston.
Public Health. 1998 Jul;112(4):217-20. doi: 10.1038/sj.ph.1900459.
This paper considers the need for personal privacy within the context of epidemiological research. It concludes that privacy can be protected by early anonymization and aggregation of personal health data without prejudicing the viability of a research project. During the period before anonymization, however, a secure legal framework is necessary to prevent unauthorized access to potentially sensitive information. Within such a framework ethical codes need to be identified and monitored by an appropriate Local Research Ethics Committee (or a Multicentre Ethics Committee acting on behalf of a number of local committees). Present arrangements within the health care system in the UK for the handling of such data remain very unsatisfactory and put patient privacy at risk.
本文探讨了流行病学研究背景下个人隐私的必要性。研究得出结论，个人健康数据的早期匿名化和汇总可以在不影响研究项目可行性的前提下保护隐私。然而，在匿名化之前的阶段，需要一个安全的法律框架来防止对潜在敏感信息的未经授权访问。在这样一个框架内，需要由适当的地方研究伦理委员会（或代表多个地方委员会行事的多中心伦理委员会）来识别和监督伦理规范。英国医疗保健系统目前处理此类数据的安排仍然非常不尽人意，使患者隐私面临风险。
