Abstract
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.
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In response to increasingly computerized medical records, the US Government has mandated privacy protections. The authors look at the ways that privacy is being protected and consider the consequences for those who would use these data that have been subjected to aggregation and other manipulations.
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Fefferman, N., O'Neil, E. & Naumova, E. Confidentiality and Confidence: Is Data Aggregation a Means to Achieve Both?. J Public Health Pol 26, 430–449 (2005). https://doi.org/10.1057/palgrave.jphp.3200029
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DOI: https://doi.org/10.1057/palgrave.jphp.3200029