Navigating direct-to-consumer genetic testing: experiences, decisions and perspectives of Dutch users.

Area of Science:

• Genetics
• Consumer Health
• Bioethics

Background:

• Limited understanding of non-US consumer experiences with health-related direct-to-consumer genetic testing (DTC-GT).
• Need for consumer-tailored approaches to ensure responsible DTC-GT utilization.

Purpose of the Study:

• To explore the decision-making processes and experiences of Dutch consumers using health-related DTC-GT.
• To identify factors influencing DTC-GT adoption and satisfaction among consumers.

Main Methods:

• Qualitative study involving in-depth interviews with twenty Dutch health-related DTC-GT consumers.
• Analysis of consumer journeys, including information seeking, decision-making, and post-testing experiences.

Main Results:

• Participants reported high satisfaction with their DTC-GT journeys.
• Key decision factors included perceived clinical utility and dissatisfaction with conventional healthcare.
• Consumers often did not consider potential negative consequences prior to testing.

Conclusions:

• Improving pre-test information and post-test support systems is crucial for responsible DTC-GT use.
• Cross-border regulation and legislation are needed to address DTC-GT challenges.
• Stakeholder engagement is recommended to develop practical solutions for empowering consumers.