Bruins Danny, Onstwedder Suzanne M, Cornel Martina C, van Mil Marc H W, Ausems Margreet G E M, Damman Olga C, Rigter Tessel
Public Health Genomics. 2025 Jul 22;28(1):1-36. doi: 10.1159/000547527.
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. Materials & Methods: Twenty semi-structured, in-person interviews were conducted with a cohort of socio-demographically 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.
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 were 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.
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.
关于欧洲公民对与健康相关的直接面向消费者的基因检测（DTC-GT）的信念、期望、态度以及与决策相关因素的定性见解很少。对其进行评估对于最终使他们能够就DTC-GT做出明智决策并负责任地使用至关重要。材料与方法：对一群社会人口统计学特征各异的荷兰公民进行了20次半结构化的面对面访谈。在访谈过程中，参与者观看了一段关于DTC-GT的信息视频以确保具备基础知识，并查看了假设的公司材料，包括估计的疾病风险，以评估公民对此类材料的反应。访谈逐字记录并进行了主题分析。
在收到访谈邀请之前，参与者普遍不了解与健康相关的DTC-GT。参与者在整个DTC-GT消费者旅程中表达了相当大的期望，并表现出一些反复出现的误解。参与者还表示对DTC-GT卖家及其做法不信任，并对他们收到的假设结果表示不满。大多数参与者表示他们不愿意接受DTC-GT，但提供的论据以及每个论据的权重因参与者而异，表明决策过程具有独特性。价格是参与者决策中的一个重要调节因素。参与者建议由独立方提供信息、制定质量标志以及实施可执行的法规和立法以支持他们的决策。
参与者对与健康相关的DTC-GT以及对DTC-GT卖家的期望似乎很高，而且决策非常个人化。通过加强信息提供、（社会）媒体宣传、教育、制定质量标志以及实施可执行的法规和立法来促进明智决策，有助于使公民能够负责任地使用DTC-GT。
