Privacy and technologically enhanced communicable disease surveillance

Dr Jane Johnson1

1The University Of Sydney , University Of Sydney, Australia

In the literature on public health, ethical concerns have been raised about the threat to individual privacy posed by data collection. The conventional response to this concern has been to distinguish data collected as part of routine public health surveillance from data collected as part of public health research, with only the latter thought to require ethical oversight and the protection of individual interests via informed consent. This response is however problematic since it is difficult to draw the distinction in a principled way, and further, and potentially more seriously, it does no real ethical work. The distinction does not justify treating data collected as part of public health surveillance differently to data collected through research. In recognition of this situation, and in response to the emergence of new potentially more intrusive technologies, there are increasing moves to introduce ethical review processes to public health surveillance.

Responding in part to this situation, Alan Rubel has proposed an alternate approach which circumvents the issues around the surveillance-research distinction. He argues that privacy in public health represents a deep personal rather than a basic interest, and that a claim based on a deep personal interest can be trumped when the basic interests of others in a community are threatened. Whilst this approach is promising, we argue that it may be unsatisfactory in the context of new technologically enhanced communicable disease surveillance. This is due to both the nature of the technology and of emerging infectious disease events. Problems in applying what we call, drawing on Rubel, the ‘unreasonable exercise test’ involve the kind of prospective assessments it requires, which may be complicated by time pressures, uncertainty and fallibility. The result may be that it is only possible to determine after an event if any infringements of privacy were justified.


Jane is a field philosopher who divides her time between the University of Sydney and Macquarie University. Her research investigates ethical questions in science and in medicine, specifically around emerging infectious diseases, animals in research, and surgical innovation.