Exploring Dutch Citizens’ Perspectives, Expectations, and Decision-Making Regarding Health-Related Direct-to-Consumer Genetic Testing

Introduction: Qualitative insights into European citizens’ beliefs, expectations, attitudes, and factors relevant for decision-making regarding health-related direct-to-consumer genetic testing (DTC-GT) are scarce. Assessment thereof is essential to eventually empower them for informed decision-making and responsible use regarding DTC-GT. Methods: Twenty semi-structured, in-person interviews were conducted with a cohort of sociodemographically diverse Dutch citizens. During the interview, participants viewed an informative video regarding DTC-GT to ensure baseline knowledge, and hypothetical company materials, including an estimated disease risk, to assess the reactions of citizens to such materials. Interviews were transcribed verbatim and thematically analyzed. Results: Participants were generally unaware of health-related DTC-GT prior to the interview invite. Participants expressed sizeable expectations across the entire DTC-GT consumer journey and demonstrated several recurring misconceptions. Participants also indicated distrust towards DTC-GT sellers and their practices and expressed dissatisfaction concerning the hypothetical results they received. Most participants indicated they would not be willing to undergo DTC-GT but provided argumentation and weight of each argument was unique to each participant, indicating unique decision-making processes. Price was an important modifying factor in participants’ decision-making. Participants suggested information provision by independent parties, development of quality marks, and implementation of enforceable regulation and legislation to support their decision-making. Conclusions: Participants’ expectations regarding health-related DTC-GT and towards DTC-GT sellers appear sizeable and decision-making very personal. Stimulating informed decision-making through enhancement of information provision, (social) media campaigns, education, development of quality marks, and implementation of enforceable regulation and legislation could aid in empowering citizens for responsible use of DTC-GT.