Personal Health Technology and Issues Surrounding Health Data

Many consumers became skeptical of the privacy issues inherent in constant and unquestioning use of activity trackers in 2011, when Fitbit users unwittingly published the details of their physical—and sexual—activity histories online, searchable by user via standard search engines, (Kashmir Hill of Forbes, “Fitbit Moves Quickly After Users’ Sex Stats Exposed,” July 5, 2011). Since that time, we have again become lax—willingly sharing our data to prevail in “challenges” with friends and opening up our trackable or countable private lives to our medical providers, insurance carriers, and employers as part of wellness initiatives. One recent study of eight of the most common wearable fitness tracking devices with Bluetooth capability found that seven of the eight trackers failed to maintain the security of the user’s login and activity information, particularly when syncing with other devices, (see Andrew Hilts, Christopher Parsons, and Jeffrey Knockel, “Every Step You Fake: A Comparative Analysis of Fitness Tracker Privacy and Security; Open Effect Report (updated April 2016). Moreover, the trackers promiscuously shared the user’s location with commercial Bluetooth “beacons” in the proximity, which are generally retailers looking for prime targets for push notifications, but also call to mind images of tech-savvy stalkers in gym parking lots and Orwellian government entities tracking dots on a screen.

There are many open questions regarding the ownership, utilization, security and monetization of medical and other health care derived data included among the relevant national and international statutes and regulations. Most notably, it appears that, once again, legal regimes and personal and collective social awareness lags behind the tech, and specifically the recent surge in “smart” health and fitness monitoring devices, the accessibility of genetic tests and results, and the significant profits currently and continually flowing from data mining and digital profiling based on medical treatment, personal healthcare and behavioral data. As we are all, most likely, contributing statistics of our prescriptions and purchases to scientific (and marketing) research and often willingly “share” or unwillingly disseminate our private lifestyle and health information, we have to ask … are we all guinea pigs?