Knowledge and Attitudes of Personalized Medicine, Genetic Testing, and Health Data Sharing: A Comprehensive Survey in the general public of the European Union

Abstract Personalized medicine, leveraging genetic, environmental, and lifestyle data, has transformed healthcare by tailoring prevention, diagnosis, and treatment to individual patients. The successful implementation of personalized approaches relies on the public's awareness and proficiency in personalized medicine, enabling access to innovative techniques and fostering a willingness to share health-related data. During two weeks in April 2023, we distributed an online survey to 6,581 respondents from 8 EU countries, including France, Germany, the Netherlands, Italy, Spain, Poland, Hungary, and Romania. The survey investigated the general public’s knowledge of personalized medicine, support for implementing genetic testing in their healthcare system, and willingness to share health data. We built three indicators from survey questions and investigated their association with each other and the respondent’s gender, age, geographical area of origin, and education level. 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. 12.11% of respondents had a high compound knowledge of the topics. Knowledge levels, however, vary among the included countries (highest in the Netherlands at 18.87%, lowest in France at 7.44%). 81.5%, instead, supported the implementation of diagnostic or therapeutic applications of genetic testing in their healthcare systems, and nuanced differences in acceptance were observed based on testing purposes. Over half of the respondents (52.35%) reported willingness to share health data for altruistic use. Both support for implementing genetic testing and the desire 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.