Hsiao-Ying Huang, Masooda Bashir
University of Illinois at Urbana-Champaign, United States of America

Tuesday, November 10, 8:30am

In this study, we investigated the flow of information and potential privacy infringements in Direct-to-Consumer (DTC) genetic testing services available online. We adopted Nissenbaum’s framework of Contextual Integrity (CI) to examine six DTC companies’ privacy policies, terms of use, and consent processes. Our analyses indicate that the flow of information within certain contexts of DTC services presents alarming privacy vulnerabilities. In this paper, we provide a new perspective that can be used when evaluating privacy vulnerabilities for a given DTC online genetic testing service. The sensitive and unique features of genetic information make privacy even more of an important consideration for this type of information than for other types of medical/health information. In addition, we have limited knowledge about the harmful consequences that can arise from privacy invasions, such as genetic information breaches, genome database hacking, and so forth. Therefore, we believe that further research and in-depth investigations from the information community are desperately needed to address the privacy of genetic information.