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Making personalized medicine ethical: a critical examination of the new promises of ‘personalized health’ in Switzerland
Science and Public Policy ( IF 2.087 ) Pub Date : 2021-07-18 , DOI: 10.1093/scipol/scab051
Gaia Barazzetti 1 , Nolwenn Bühler 2 , Marc Audétat 3 , Alain Kaufmann 3
Affiliation  

This article explores how promises are forged in the emerging techno-scientific field of ‘personalized health’ (PH) in Switzerland and how they challenge the research-healthcare boundary when dealing with issues of ethical acceptability. Switzerland provides a relevant location in which to examine these questions as PH has emerged in this context with the specific connotation of improving health in the population as a whole, through the development of a data infrastructure to enable nationwide accessibility and sharing of health-related data. Drawing on our analyses of discourses and practices of scientific and institutional actors, we show that the development of PH in Switzerland is the result of ethical boundary work aimed at enrolling local biomedical institutions, heterogeneous groups of professionals, as well as the general public in nationwide research initiatives with important implications for healthcare and the healthcare system.

中文翻译:

使个性化医疗合乎道德:对瑞士“个性化健康”新承诺的批判性检验

本文探讨了如何在瑞士新兴的“个性化健康”(PH) 技术科学领域做出承诺,以及在处理伦理可接受性问题时,它们如何挑战研究与医疗保健的界限。瑞士提供了一个相关的地点来研究这些问题,因为 PH 在这种情况下已经出现,其具体内涵是通过开发数据基础设施以实现全国范围内的健康相关数据的可访问性和共享,从而改善整个人口的健康状况. 根据我们对科学和机构参与者的话语和实践的分析,我们表明,瑞士 PH 的发展是道德边界工作的结果,旨在招收当地的生物医学机构、异质的专业群体、
更新日期:2021-07-18
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