Enhancing Surveillance: New Data, New Technologies, and New Actors

Francis, John G.; Francis, Leslie P.

New data are being used and new actors are engaging in surveillance by, for, and about public health. This chapter surveys many of these developments: interoperable electronic health records, retained blood spots from newborn screening, biobanks and other genetic databases. patient registries, information gained in research, direct to consumer testing (including genetic testing), smartphones and smartphone apps, wearables and biosensors, and robots and smart devices. It explores the possibilities for bias introduced by the use of artificial intelligence and questions common assumptions about the permissibility of using deidentified data. It also considers how private sector actors such as social media platforms may further public health but have economic interests orthogonal to or in tension with public health. These developments in data use and analysis carry the potential for great benefit but also significant risks of harm. The chapter concludes that regulation is uneven at best and that increased oversight and transparency are imperative to avoid backlash and sustain trust in these novel forms of data use.