Are You Willing to Share Your DNA With Us? An Exploratory Insight Into the Privacy Calculus of Direct-To-Consumer Genetic Testing

Abstract

The storage and use of consumers' genetic information have increased in recent years, turning direct-to-consumer genetic testing companies into multimillion-dollar organizations. However, submitting DNA to a private company could be seen as a risky activity for consumers because of the highly sensitive nature of genetic information. This study takes an exploratory approach and addresses how consumers make decisions regarding direct-to-consumer DNA tests. Through a survey of 243 members of a Swedish genealogy association, we find that the perceived benefits that consumers obtain through this test, such as obtaining information about their heritage and unknown relatives, are highly significant determinants of undertaking a genetic test. Moreover, the results indicate that privacy concerns and the perception of control over the data influence the decision. This study contributes to the limited knowledge of decision-making in the context of sharing DNA with commercial actors. The results provide valuable insights for both consumers and policymakers.