Abstract
The Ethics of Uncertainty for Data Subjects
Highlights
Modern mass data collection and analysis promise great innovation in the health domain, as well as significant uncertainty
In what follows it will be argued that within the context of current data practices it is often unclear whether a data transfer can really count as a donation, because whether it is truly a donation is itself a morally significant uncertainty
In what follows I focus on two highpriority interests that are impacted by the unknowns discussed in the previous section: one’s ability as a potential data subject to trust others with one’s data, and one’s ability to determine one’s own moral obligations in relation to oneself and others where data issues are concerned
Summary
Modern mass data collection and analysis promise great innovation in the health domain, as well as significant uncertainty. The analysis in this chapter is complementary to such an “anticipatory ethics” but does not aim to forecast future developments Instead, it looks at the causes and practical consequences of uncertainty for data subjects in the present tense.. Other things equal, we should take feasible policy measures to mitigate uncertainty Such strategies, if effective, could make it less ethically problematic to obtain the many benefits associated with mass data collection and analysis, and could help people overcome the “fear of data mining” mentioned at the beginning of this section
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