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哈哈镜:个性化医疗中的“我”。

The funhouse mirror: the I in personalised healthcare.

机构信息

Institute for Science in Society, Faculty of Science, Radboud University, PO Box 6751, 6503, GG, Nijmegen, The Netherlands.

Department of Social Sciences, Wageningen University & Research, PO Box 8130, 6700, EW, Wageningen, The Netherlands.

出版信息

Life Sci Soc Policy. 2021 Jan 5;17(1):1. doi: 10.1186/s40504-020-00108-0.

Abstract

Precision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a 'data mirror' that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

摘要

精准医学的理念是,日益增多的相对廉价且高效的自我追踪设备使得收集多种表型数据成为可能。N=1 研究的倡导者强调,个人数据为优化个人健康提供了无数机会。与此同时,使用生物标志物数据进行生活方式干预已经显示出存在复杂的挑战。在本文中,我们认为精准医学领域的研究人员需要解决数据收集的表现维度。我们提出哈哈镜作为个人健康数据使用的隐喻;每个健康数据源都会产生特定类型的图像,可以将其视为特定且有偏差的“数据镜”。这需要个人有能力充分解释由此提供的图像。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/74eb/7784356/04998d54d05e/40504_2020_108_Fig1_HTML.jpg

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