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澳大利亚流行病学研究中的记录链接:健康益处、隐私保护及未来潜力

Record linkage in Australian epidemiological research: health benefits, privacy safeguards and future potential.

作者信息

Sibthorpe B, Kliewer E, Smith L

机构信息

National Centre for Epidemiology and Population Health, Australian National University, Canberra.

出版信息

Aust J Public Health. 1995 Jun;19(3):250-6. doi: 10.1111/j.1753-6405.1995.tb00439.x.

Abstract

Epidemiologists are increasingly concerned with the health effects of interventions and of exposure to noninfectious agents, but there may be long periods between exposure and outcome. Collecting information from respondents is a costly and often inefficient way of obtaining the longitudinal data necessary to study these effects. Linking existing data can be an effective and efficient alternative. However, it is often not practicable to obtain informed consent from the individuals whose records are to be linked. This raises important issues relating to protection of privacy. This paper examines the health benefits and privacy issues of epidemiological and health services research involving record linkage in Australia. The future potential for studies based on record linkage is discussed in the context of recent national and international developments in data protection. In the interests of public health and the rational use of health resources a balance must be struck between protecting individual privacy and conducting such health research for the common good.

摘要

流行病学家越来越关注干预措施以及接触非传染性病原体对健康的影响,但从接触到产生结果之间可能会有很长时间。从受访者那里收集信息是获取研究这些影响所需纵向数据的一种成本高昂且往往效率低下的方式。链接现有数据可能是一种有效且高效的替代方法。然而,要从那些记录将被链接的个人那里获得知情同意往往是不可行的。这引发了与隐私保护相关的重要问题。本文探讨了澳大利亚涉及记录链接的流行病学和卫生服务研究的健康益处及隐私问题。在近期数据保护方面的国内和国际发展背景下,讨论了基于记录链接的研究的未来潜力。为了公众健康利益以及合理利用卫生资源,必须在保护个人隐私与为了共同利益开展此类健康研究之间找到平衡。

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