My Quantified Self, My FitBit and I: The Polymorphic Concept of Health Data and the Sharer’s Dilemma.

Abstract

The rise of wearable tech, namely devices with sensors measuring the user’s daily activities and habits seems to be suggesting a paradox in the post-Snowden era: On one hand, it is generally accepted that unauthorised use, storage and processing of the user’s private data by the state directly clashes with our fundamental rights for privacy; on the other, the user seems to be keen on self-recording and storing one’s own data by willingly using sensors, enabling him to learn more about one’s habits, general health status or even personality. In the era of wearable tech we seem to be accepting that measuring data is not a privacy infringement but a self-surveillance exercise in a quest to get to know ourselves better, most acute to exercising one’s right to free expression. Yet, how is this addressed in legal terms? The focal point for this paper is to address the nascent phenomenon of users actively partaking in the QS movement by wilfully sharing health related datasets. Part 1 notes the transition from the “right to be let alone” to the right to own one’s data as the underlying rational for QS: is it a form of expression regarding a tradable commodity in a free market or a matter of greater public importance? Part 2 dissects the dilemma in sharing health data for public health and/or research purposes exceeding the strict limits of private sphere. The unfortunate case of Google Health, the unconstitutional purchase of Iceland’s national datasets by deCODE and the mishap of the Care.data are studied to shed light to the many faces of our Quantified Selves: Is the current legislative approach fit for facilitating the QS movement, as a type of self-expression? The paper critically examines self-measurement technologies from a legal perspective and calls for urgent reforms in self-measured data protection.