欧洲调查:公民对个性化医疗、基因检测和健康数据共享的态度--设计与交付。

Personalized medicine Pub Date : 2024-01-01 Epub Date: 2024-07-04 DOI:10.1080/17410541.2024.2342770
Francesco Andrea Causio, Flavia Beccia, Loes Lindiwe Kreeftenberg, Giovanna Elisa Calabrò, Roberta Pastorino, Stefania Boccia, Carla van El
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引用次数: 0

摘要

在医疗保健领域的变革中,个性化医疗是一个关键的转变,它利用基因、环境和生活方式数据来定制医疗方案,以提高疗效和成本效益。在数据隐私问题日益受到关注的情况下,公众参与并同意共享健康数据是个性化医疗取得成功的关键。为了调查欧洲公众对这一模式的看法,我们开展了一项全面的横向调查,以了解公众对个性化医疗和数据共享模式(包括数字工具和电子记录)的看法。调查在欧盟八个主要国家进行,调查结果旨在指导未来的政策制定和建立信任措施,以确保健康数据的安全交换。本文介绍了我们的方法论,调查结果将在随后的出版物中阐述。
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European survey: citizens' attitudes on personalized medicine, genetic testing and health data sharing - design and delivery.

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.

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