Pandemic surveillance: ethics at the intersection of information, research, and health

In Margaret Hu (ed.), Pandemic Surveillance: Privacy, Security, and Data Ethics. Cheltenham, UK: Edward Elgar. pp. 187-196 (2022)
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Abstract

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare in relation to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight.

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Daniel Susser
Cornell University

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