Fefferman Nina H, O'Neil Eileen A, Naumova Elena N
Department of Public Health and Family Medicine, Tufts University school of Medicine, 136 Harrison Avenue, USA.
J Public Health Policy. 2005 Dec;26(4):430-49. doi: 10.1057/palgrave.jphp.3200029.
The recent adoption of electronic technologies for use in management of personal health data have been accompanied by a commensurate level of concern about privacy. Public health authorities have been able to continue their full access to personal information, while restricting the information given to academic health researchers through the practice of aggregation. Through this band-aid strategy, there is a very real potential that critical pieces of information are missing for the purposes of research. While this might be a logical sacrifice in order to preserve individual privacy, quantitative analysis of the privacy gained through this method of aggregation shows that little, if any, benefit is achieved. If aggregation were the sole available means to reach the aims of both privacy and research, then further analysis of the practice of aggregation would be unnecessary. Yet suitable privacy protection techniques abound, enabling academic research to progress while adding true protection to individual health information.
近期,将电子技术用于个人健康数据管理的做法引发了相当程度的隐私担忧。公共卫生当局能够继续全面获取个人信息,同时通过汇总做法限制向学术健康研究人员提供的信息。通过这种权宜之计,极有可能出现研究所需的关键信息缺失的情况。虽然为保护个人隐私这可能是一种合乎逻辑的牺牲,但对通过这种汇总方法获得的隐私进行定量分析表明,即便有任何益处,也微乎其微。如果汇总只是实现隐私和研究目标的唯一可用手段,那么就无需对汇总做法进行进一步分析。然而,合适的隐私保护技术比比皆是,既能推动学术研究进展,又能真正保护个人健康信息。