Do I Spit or Do I Pass?: Perceived Privacy and Security Concerns of Direct-to-Consumer Genetic Testing

This study explores privacy concerns perceived by people with respect to having their DNA tested by direct-to-consumer (DTC) genetic testing companies such as 23andMe and Ancestry.com. Data collected from 510 respondents indicate that those who have already obtained a DTC genetic test have significantly lower levels of privacy and security concerns than those who have not obtained a DTC genetic test. Qualitative data from respondents of both these groups show that the concerns are mostly similar. However, the factors perceived to alleviate privacy concerns are more varied and nuanced amongst those who have obtained a DTC genetic test. Our data suggest that privacy concerns or lack of concerns are based on complex and multiple considerations including data ownership, access control of data and regulatory authorities of social, political and legal systems. Respondents do not engage in a full cost/benefit analysis of having their DNA tested.