European Survey on Citizens’ Attitudes towards Personalized Medicine, Genetic Testing, and Health Data Sharing: Design and Delivery

medrxiv(2024)

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摘要
Personalized medicine leverages genetic, environmental, and lifestyle information to enhance the efficacy and safety of medical interventions. The shift from traditional one-size-fits-all approaches to a more individualized strategy signifies a major evolution in healthcare systems globally, promising improved patient outcomes and cost-effectiveness. A critical aspect of implementing personalized medicine is the role of public participation and their attitudes toward sharing health data. With growing concerns over data privacy, understanding and addressing public perceptions is essential. For this purpose, we designed and conducted a cross-sectional survey in Europe to gather public attitudes toward personalized medicine and health data sharing. The addressed issues range from knowledge and views to means of data sharing, e.g., via digital health instruments and electronic health care records. These insights are crucial for developing policies and practices that can help build trust and foster a secure environment for healthcare data sharing. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study is funded by the National Center for Disease Prevention and Control (CCM), Italian Ministry of Health (CCM2021, CUP B85F21004970001) and the European network staff eXchange for integrating precision health in the Health Care Systems (ExACT) project, funded by the European Union Horizon 2020 research and innovation program, RISE Marie Curie Actions, under grant agreement n. 823995. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The final version was validated by experts in both institutions and submitted to the ethical review boards of Amsterdam University Medical Center, which did not object to the study (reference 2022.0214), and Fondazione Policlinico Universitario Agostino Gemelli in Rome, where it was approved with ID 5047. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors
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