"Becoming part of something bigger": Direct to consumer genetic testing, privacy, and personal disclosure

Direct to consumer genetic testing (DTCGT) services where users can identify their inherited diseases and traits, find genetic relatives, and learn more about their ethnic heritage continue to grow in popularity. At the same time, one’s DNA is one of the most identifiable, immutable forms of personal information, and sharing it carries risks to one’s privacy. What motivates individuals to engage in DTCGT, and what are the implications for information privacy at both the individual and societal levels? This study uses qualitative interviews with ten customers of the DTCGT service 23andMe to explore why they engaged in DTCGT, the benefits they received, their expectations of privacy, and perceptions of risk. It also introduces the use of social exchange theory as a theoretical framework for examining the social dimensions of information privacy and personal disclosure. The findings demonstrate that the participants’ assumptions of anonymity, as well as their their belief that their contributions to online genetic databases aid the public good, were key motivating factors. The participants were generally unaware of the potential risks to their individual genetic privacy as well as the impact of large scale genetic testing databases on networked, collective privacy. The findings demonstrate that framework of social exchange theory aids in understanding how the form of the relationship affected the participants’ decisions to disclose their personal information to 23andMe as well as their perceptions of risk in the DTCGT context. © 2019 Copyright held by the owner/author(s). Publication rights licensed to ACM.