Proficiency in Personalized Medicine and Health Data Sharing in the EU

Abstract Personalized medicine, leveraging genetic, environmental, and lifestyle data, has already transformed healthcare by tailoring prevention, diagnosis, and treatment to individual patients. The successful development and implementation of personalized approaches rely on the public’s proficiency and awareness of personalized medicine, enabling access to innovative techniques and fostering a willingness to share health-related data. We distributed a survey to 6,581 respondents from 8 EU countries: France, Germany, the Netherlands, Italy, Spain, Poland, Hungary, and Romania. 52.5% of respondents were female (n = 3,458), with a mean age of 48.5 years (range 18-89 years, median = 49 years, SD = 15.96), and 37.91% of the participants reported achieving tertiary education. Our survey investigates the general public’s knowledge of personalized medicine, support for genetic testing, and willingness to share health data among EU citizens while assessing their perception and acceptance of these medical paradigms. Knowledge levels vary among different EU countries. Only 12.11% of respondents had a high knowledge of the topics presented in this survey. Support for implementing genetic testing in healthcare was high, with 81.52% supporting the implementation of genetic testing in their healthcare systems, and nuanced differences in acceptance were observed based on testing purposes. 52.35% reported willingness to share health data. Both support for implementing genetic testing and the willingness to share health data correlated positively with knowledge and education levels. Geographical differences within the EU highlighted variations in attitudes toward personalized medicine and data sharing, with respondents from Southern Europe displaying higher odds than their peers in Central and Eastern Europe. The results emphasize the need for targeted communication and education strategies to enhance public understanding and trust in personalized medicine and health data sharing. Key messages • High support for genetic testing across the EU highlights the need for enhanced public education on personalized medicine to boost understanding and data sharing willingness. • Geographical differences in attitudes toward personalized medicine in the EU suggest targeted strategies to build trust and knowledge, particularly in Central Europe.