Your Mental Health Data is For Sale! The Impact of Data Brokers on the Exchange and Use of Mental Health Data and the Related Implications on the Personal Privacy of Depressed and Anxious Individuals

Abstract

The purpose of this thesis was to make more transparent the opaque data broker industry and its processes for selling and exchanging mental health data about depressed and anxious individuals. The research is critical as more depressed and anxious individuals utilize personal devices and software-based health tracking applications (which are not protected by HIPAA), often unknowingly putting their sensitive mental health data at risk. By initiating sales inquiries with the data brokers, purchasing a dataset, and evaluating the privacy policies of ten firms, this thesis unveiled the data broker industry and the exchange of mental health data in the data economy. Furthermore, the findings highlight the industry’s lack of business best practices, particularly concerning issues of privacy. The unregulated and black-box nature of the data broker industry, the exchange of sensitive mental health data, and the lack of clear consumer privacy protections necessitate a comprehensive federal privacy law or, at the very least, an expansion of HIPAA’s privacy protections.