Direct-to-Consumer Genetic Testing: Contextual Privacy Predicament

摘要

In this study, we investigated the flow of information andrnpotential privacy infringements in Direct-to-Consumerrn(DTC) genetic testing services available online. We adoptedrnNissenbaum’s framework of Contextual Integrity (CI) tornexamine six DTC companies’ privacy policies, terms ofrnuse, and consent processes. Our analyses indicate that thernflow of information within certain contexts of DTC servicesrnpresents alarming privacy vulnerabilities. In this paper, wernprovide a new perspective that can be used when evaluatingrnprivacy vulnerabilities for a given DTC online geneticrntesting service. The sensitive and unique features of geneticrninformation make privacy even more of an importantrnconsideration for this type of information than for otherrntypes of medical/health information. In addition, we havernlimited knowledge about the harmful consequences that canrnarise from privacy invasions, such as genetic informationrnbreaches, genome database hacking, and so forth.rnTherefore, we believe that further research and in-depthrninvestigations from the information community arerndesperately needed to address the privacy of geneticrninformation.