Unconsented data transfusions: attitudes towards extracting personal device data for public health emergencies

Abstract

Despite privacy and security concerns, personal data on smartphones could be of beneficial use to society, for example during national emergencies. User attitudes were collected through a small focus group approach to reveal what citizens' opinions may be towards extraction of medical data in the event of a public health incident. Thematic analysis revealed four themes with an overarching theme of "my phone is part of my body". This small-scale proof of concept study established individuals view smartphones akin to organs or limbs, where forced access, without consent, is assault. They consider the benefits to society of unconsented access to medical and other personal data on mobile devices must be overwhelming before such acquisition is considered acceptable. The analysis also points to the difficulty of gaining consent, a lack of knowledge about legal aspects, and a distrust about the state collecting data.