Digital phenotyping – Editorial

IF 6.5 1区 社会学 Q1 SOCIAL SCIENCES, INTERDISCIPLINARY Big Data & Society Pub Date : 2022-07-01 DOI:10.1177/20539517221113775
Lukas Engelmann, G. Wackers
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引用次数: 1

Abstract

There is an astonishing posthuman promise in digital phenotyping, as Beth Semel recently argued (Semel, 2022). The goal of digital phenotyping enthusiasts is no less than to bypass the human observer as a deeply flawed threshold of medical knowledge production. The second goal is then – ultimately – to rid the human body and mind of its frailty and to utilise technology for a ‘world without disease’ (Topol and Corr, 2019). This promissory rhetoric is not only geared towards the disruption of dated medical conventions but comes equipped with bold, revolutionary concepts. Objective knowledge, based on aggregated, automated, and sweeping data collection to deliver granular, minute, and personalised healthcare; digital phenotyping is a collection of ideas, technologies, and practices to realise a powerful and futuristic vision of a medicine far beyond human capacities. This posthuman promise might be naive and driven by an abundant positivism, but as a small movement, made up of medical researchers and digital disruptors alike, it has continuously gathered steam over the last decade. The purpose of this collection is foremost to take stock and to collect a range of critical questions for a first revision of what digital phenotyping might be and what it could potentially become. The meaning of digital phenotyping is not as well defined as the many publications in this growing body of scholarship might suggest. Some of that vagueness has been captured in the critical literature. Birk and Samuel, in their sociological analysis, have described the term recently in more general terms as an analytical concept that presumes simply that diseases and illness are by and large ‘measurable by digital devices’ (Birk and Samuel, 2020). This assumes that a person’s experience of any kind of suffering is always in one way or another expressed in the digital traces of their behaviour. The leg injury that might result in a different mobility pattern; measurable tremors in the thumb control of smartphones as a sign of Parkinson’s; sudden lack of social interaction as a sign of depression: digital phenotypes can in theory be defined for any illness and disease and captured by any of the sensors, devices, and technologies, through which humans leave digital traces. Loi, in his ethical and philosophical exploration of the digital phenotype, assumes it in more general terms to be ‘an assemblage of information in digital form, that humans produce intentionally or as a by-product of other activities, and which affects human behaviour’ (Loi, 2018). Many questions remain, not least why and how this concept seeks association with genetic terminology. What does the wholesale capturing of a human’s digital traces as phenotype imply? What does it mean to group a sheer endless range of symptoms within the paradigm of inheritable traits and how does this framing structure research on and with digital phenotypes? The phrase itself was coined by the physician Sachin Jain and colleagues at Harvard in 2015 in a letter to Nature Biotechnology. Conceptually, they conceived of digital phenotyping with reference to Richard Dawkins’ elaborations on the ‘extended phenotype’ (Jain et al., 2015; Dawkins, 1982). Not only did they see digital technologies equipped to deliver a never-before-seen mass of potentially valuable data for diagnostics and prognostics but importantly these data were produced beyond the brief and cursory encounters between patients and physicians. The full-scale exploitation of these data would enable new insight into disease expressions over a lifetime. This was not only an expansion of surveillance but would open a new paradigm of medical knowledge production: rather than just recording symptoms in a medical consultation, ‘digital phenotypes redefine disease expression in terms of the lived experience of individuals, which expands our ability to classify and understand disease’ (Jain et al., 2015). In a 2017 JAMA article, the American neuroscientist Thomas R. Insel conceptualized digital phenotyping into nothing less but a ‘New Science of Behaviour’ (Insel, 2017). Since then, the phrase has given
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数字表型——编辑
正如Beth Semel最近所说的那样,数字表现型有一个惊人的后人类前景(Semel, 2022)。数字表现型爱好者的目标不亚于绕过人类观察者作为医学知识生产的一个存在严重缺陷的门槛。第二个目标是——最终——消除人类身心的脆弱,并利用技术实现“没有疾病的世界”(Topol和Corr, 2019)。这种承诺的修辞不仅是为了打破过时的医疗惯例,而且还配备了大胆的、革命性的概念。客观知识,基于聚合、自动化和全面的数据收集,提供细粒度、分钟和个性化的医疗保健;数字表型是一种想法、技术和实践的集合,旨在实现一种远远超出人类能力的强大而未来的医学愿景。这种后人类的承诺可能是幼稚的,并受到大量实证主义的推动,但作为一场由医学研究人员和数字颠覆者组成的小运动,它在过去十年中不断积聚动力。这个集合的目的首先是评估和收集一系列关键问题,以便首次修订数字表型可能是什么以及它可能成为什么。数字表现型的含义并不像这个不断增长的学术机构中的许多出版物所暗示的那样定义得很好。这种模糊性在批评文学中有所体现。Birk和Samuel在他们的社会学分析中,最近用更一般的术语描述了这个术语,作为一个分析概念,它简单地假设疾病和疾病总体上是“通过数字设备可测量的”(Birk和Samuel, 2020)。这假设一个人对任何一种痛苦的经历总是以这样或那样的方式表现在他们行为的数字痕迹中。腿部损伤可能导致不同的活动模式;智能手机拇指控制的可测量震颤是帕金森症的征兆;突然缺乏社交互动是抑郁症的标志:理论上,数字表型可以定义为任何疾病,并被任何传感器、设备和技术捕获,人类通过这些传感器、设备和技术留下数字痕迹。Loi在其对数字表现型的伦理和哲学探索中,将其更一般地假设为“人类有意或作为其他活动的副产品产生的数字形式的信息集合,并影响人类行为”(Loi, 2018)。许多问题仍然存在,尤其是为什么以及如何将这个概念与遗传术语联系起来。大规模捕获人类数字痕迹作为表现型意味着什么?在可遗传特征的范式中把一系列的症状归类意味着什么这个框架结构是如何研究数字表现型的?这个短语本身是由哈佛大学医生萨钦·贾恩(Sachin Jain)及其同事在2015年写给《自然生物技术》的一封信中创造的。从概念上讲,他们参照Richard Dawkins对“扩展表型”的阐述构思了数字表型(Jain et al., 2015;道金斯,1982)。他们不仅看到数字技术为诊断和预后提供了前所未有的大量潜在有价值的数据,而且重要的是,这些数据的产生超越了患者和医生之间简短而粗略的接触。对这些数据的全面利用将使人们对一生中的疾病表现有新的认识。这不仅是监测的扩展,而且将打开医学知识生产的新范式:而不仅仅是在医疗咨询中记录症状,“数字表型根据个人的生活经验重新定义疾病表达,这扩展了我们分类和理解疾病的能力”(Jain et al., 2015)。在2017年《美国医学杂志》的一篇文章中,美国神经科学家托马斯·r·英塞尔将数字表现型概念化为一门“新的行为科学”(英塞尔,2017年)。从那以后,这句话就流传了
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来源期刊
Big Data & Society
Big Data & Society SOCIAL SCIENCES, INTERDISCIPLINARY-
CiteScore
10.90
自引率
10.60%
发文量
59
审稿时长
11 weeks
期刊介绍: Big Data & Society (BD&S) is an open access, peer-reviewed scholarly journal that publishes interdisciplinary work principally in the social sciences, humanities, and computing and their intersections with the arts and natural sciences. The journal focuses on the implications of Big Data for societies and aims to connect debates about Big Data practices and their effects on various sectors such as academia, social life, industry, business, and government. BD&S considers Big Data as an emerging field of practices, not solely defined by but generative of unique data qualities such as high volume, granularity, data linking, and mining. The journal pays attention to digital content generated both online and offline, encompassing social media, search engines, closed networks (e.g., commercial or government transactions), and open networks like digital archives, open government, and crowdsourced data. Rather than providing a fixed definition of Big Data, BD&S encourages interdisciplinary inquiries, debates, and studies on various topics and themes related to Big Data practices. BD&S seeks contributions that analyze Big Data practices, involve empirical engagements and experiments with innovative methods, and reflect on the consequences of these practices for the representation, realization, and governance of societies. As a digital-only journal, BD&S's platform can accommodate multimedia formats such as complex images, dynamic visualizations, videos, and audio content. The contents of the journal encompass peer-reviewed research articles, colloquia, bookcasts, think pieces, state-of-the-art methods, and work by early career researchers.
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