Erikainen Sonja, Chan Sarah
Usher Institute of Population Health Sciences and Informatics, College of Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK.
New Genet Soc. 2019 Jul 12;38(3):308-330. doi: 10.1080/14636778.2019.1637720. eCollection 2019.
In recent years, discourses around "personalized," "stratified," and "precision" medicine have proliferated. These concepts broadly refer to the translational potential carried by new data-intensive biomedical research modes. Each describes expectations about the future of medicine and healthcare that data-intensive innovation promises to bring forth. The definitions and uses of the concepts are, however, plural, contested and characterized by diverse ideas about the kinds of futures that are desired and desirable. In this paper, we unpack key disputes around the "personalized," "stratified," and "precision" terms, and map the epistemic, political and economic contexts that structure them as well as the different roles attributed to patients and citizens in competing future imaginaries. We show the ethical and value baggage embedded within the promises that are manufactured through terminological choices and argue that the context and future-oriented nature of these choices helps to understanding how data-intensive biomedical innovations are made socially meaningful.
近年来，围绕“个性化”“分层”和“精准”医学的论述激增。这些概念广泛指代新的数据密集型生物医学研究模式所具有的转化潜力。每一个概念都描述了对医学和医疗保健未来的期望，而数据密集型创新有望带来这些期望。然而，这些概念的定义和用法是多样的、有争议的，其特点是对理想未来的种类有着不同的看法。在本文中，我们剖析了围绕“个性化”“分层”和“精准”这些术语的关键争议，描绘了构成这些争议的认识论、政治和经济背景，以及在相互竞争的未来想象中赋予患者和公民的不同角色。我们揭示了通过术语选择所制造的承诺中所蕴含的伦理和价值包袱，并认为这些选择的背景和面向未来的性质有助于理解数据密集型生物医学创新如何具有社会意义。
