Genetic Data Privacy and Consumer Choice Behavior: An Exploratory Study on Direct-To-Consumer Genetic Testing

Abstract

The rapid growth of the Direct-to-Consumer Genetic Testing (DTC-GT) industry has raised significant concerns regarding the collection, storage, and use of highly sensitive genetic information. This study aims to address the existing research gaps by examining consumer privacy and choice behavior in the context of DTC-GT. To accomplish this, an extensive literature review and a theoretical framework based on privacy calculus and trust theory was used to construct a research model. This explains the consumer choice of sharing genetic data by conducting DTC-GT through incorporating perceived benefits, privacy concerns, information sensitivity, privacy control, and the moderating effect of trust in governmental law and regulations. The model was tested through an online survey and quantitative data analysis, based on a sample of 242 members of a Swedish national genealogy association to ensure a high-quality sample comprising a substantial genetic test-takers rate. Findings indicate that consumers engage in cost-benefit analysis, weighing privacy concerns against perceived benefits in their decision to undertake DTC-GT. Further, findings suggest that the importance of privacy control diminishes when there is a high level of trust in the law and regulation. Through uncovering results and analysis, this study contributes to the existing knowledge of consumer privacy in the DTC-GT industry and provides valuable insights for consumers to protect personal privacy, regulators to develop uniform policies, and businesses to improve privacy communication.