Bruynseels Koen, Santoni de Sio Filippo, van den Hoven Jeroen
Department of Philosophy, Faculty of Technology, Policy and Management, Delft University of Technology, Delft, Netherlands.
Front Genet. 2018 Feb 13;9:31. doi: 10.3389/fgene.2018.00031. eCollection 2018.
Personalized medicine uses fine grained information on individual persons, to pinpoint deviations from the normal. 'Digital Twins' in engineering provide a conceptual framework to analyze these emerging data-driven health care practices, as well as their conceptual and ethical implications for therapy, preventative care and human enhancement. Digital Twins stand for a specific engineering paradigm, where individual physical artifacts are paired with digital models that dynamically reflects the status of those artifacts. When applied to persons, Digital Twins are an emerging technology that builds on representations of an individual that dynamically reflect molecular status, physiological status and life style over time. We use Digital Twins as the hypothesis that one would be in the possession of very detailed bio-physical and lifestyle information of a person over time. This perspective redefines the concept of 'normality' or 'health,' as a set of patterns that are regular , against the backdrop of patterns observed in the population. This perspective also will impact what is considered therapy and what is enhancement, as can be illustrated with the cases of the 'asymptomatic ill' and life extension via anti-aging medicine. These changes are the consequence of how meaning is derived, in case measurement data is available. Moral distinctions namely may be based on patterns found in these data and the meanings that are grafted on these patterns. Ethical and societal implications of Digital Twins are explored. Digital Twins imply a data-driven approach to health care. This approach has the potential to deliver significant societal benefits, and can function as a social equalizer, by allowing for effective equalizing enhancement interventions. It can as well though be a driver for inequality, given the fact that a Digital Twin might not be an accessible technology for everyone, and given the fact that patterns identified across a population of Digital Twins can lead to segmentation and discrimination. This duality calls for governance as this emerging technology matures, including measures that ensure transparency of data usage and derived benefits, and data privacy.
个性化医疗利用关于个体的细粒度信息来精准识别与正常情况的偏差。工程领域的“数字孪生”提供了一个概念框架,用于分析这些新兴的数据驱动型医疗保健实践,以及它们在治疗、预防保健和人类增强方面的概念和伦理影响。数字孪生代表一种特定的工程范式,其中单个物理工件与动态反映这些工件状态的数字模型配对。当应用于人类时,数字孪生是一种新兴技术,它基于对个体的表征,这些表征会随着时间动态反映分子状态、生理状态和生活方式。我们将数字孪生作为一种假设,即一个人会长期拥有关于另一个人的非常详细的生物物理和生活方式信息。这种观点重新定义了“正常”或“健康”的概念,将其视为在人群中观察到的模式背景下一组规律的模式。这种观点也将影响什么被视为治疗以及什么被视为增强,这可以通过“无症状患者”的案例以及通过抗衰老药物实现寿命延长的案例来说明。这些变化是在有测量数据可用的情况下意义推导方式的结果。道德区分可能基于在这些数据中发现的模式以及嫁接到这些模式上的意义。本文探讨了数字孪生的伦理和社会影响。数字孪生意味着一种数据驱动的医疗保健方法。这种方法有可能带来重大的社会效益,并可以作为一种社会均衡器,通过允许进行有效的均衡增强干预来发挥作用。然而,鉴于数字孪生可能并非对每个人来说都是可及的技术,并且鉴于在一群数字孪生中识别出的模式可能导致分层和歧视,它也可能成为不平等的驱动因素。随着这项新兴技术的成熟,这种双重性需要治理,包括确保数据使用和衍生利益的透明度以及数据隐私的措施。
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