Mobile and wearable devices, such as smartwatches and fitness trackers, increasingly enable the continuous collection of physiological and behavioral data that permit inferences about users’ physical and mental health. Growing consumer adoption of these technologies has reduced the cost of generating clinically meaningful data. This can help reduce medical research costs and aid large-scale studies. However, the collection, processing, and storage of data comes with significant ethical, security, and data governance considerations. Here, we use the emerging concept of “digital phenotyping” to highlight key lessons for data governance that draw on parallels with the history of genomics research, while highlighting areas in which digital phenotyping will require novel governance frameworks.
A new paper in the Journal of the American Medical Informatics Association by Ignacio Perez-Pozuelo, Dimitris Spathis, Jordan Gifford-Moore, Jessica Morley and myself has just been published.