European survey: citizens' attitudes on personalized medicine, genetic testing and health data sharing - design and delivery.
Francesco Andrea CausioFlavia BecciaLoes Lindiwe KreeftenbergGiovanna Elisa CalabròRoberta PastorinoStefania BocciaCarla van ElPublished in: Personalized medicine (2024)
In the transformative landscape of healthcare, personalized medicine emerges as a pivotal shift, harnessing genetic, environmental and lifestyle data to tailor medical treatments for enhanced outcomes and cost efficiency. Central to its success is public engagement and consent to share health data amidst rising data privacy concerns. To investigate European public opinion on this paradigm, we executed a comprehensive cross-sectional survey to capture the general public's views on personalized medicine and data-sharing modalities, including digital tools and electronic records. The survey was distributed in eight major European Union countries and the results aim at guiding future policymaking and trust-building measures for secure health data exchange. This article delineates our methodological approach, whereby survey findings will be expounded in subsequent publications.
Keyphrases
- healthcare
- big data
- health information
- electronic health record
- mental health
- public health
- cardiovascular disease
- type diabetes
- metabolic syndrome
- cross sectional
- physical activity
- data analysis
- machine learning
- emergency department
- human health
- genome wide
- dna methylation
- climate change
- glycemic control
- single cell
- insulin resistance
- health promotion
- affordable care act