In this paper, we examine the practice and promises of digital phenotyping. We build on work on the ‘data self’ to focus on a medical domain in which the value and nature of knowledge and relations with data have been played out with particular persistence, that of Alzheimer's disease research. Drawing on research with researchers and developers, we consider the intersection of hopes and concerns related to both digital tools and Alzheimer's disease using the metaphor of the ‘data shadow’. We (...) suggest that as a tool for engaging with the nature of the data self, the shadow is usefully able to capture both the dynamic and distorted nature of data representations, and the unease and concern associated with encounters between individuals or groups and data about them. We then consider what the data shadow ‘is’ in relation to ageing data subjects, and the nature of the representation of the individual's cognitive state and dementia risk that is produced by digital tools. Second, we consider what the data shadow ‘does’, through researchers and practitioners’ discussions of digital phenotyping practices in the dementia field as alternately empowering, enabling and threatening. (shrink)

Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...) associated with experimental design, including controlled variation and randomization, this chapter will provide a summary of key ethical issues that tend to arise in experimental contexts. In addition, by exploring assumptions about the nature of causation and by analyzing features of causal relationships, systems, and inferences in social contexts, this chapter will summarize the ways in which experimental design can undermine the integrity of not only social and behavioral research but policies implemented on the basis of such research. (shrink)

The COVID-19 pandemic redefines how we think about the body, physiologically and socially. But what does it mean to have and to be a body in the COVID-19 pandemic? The COVID-19 pandemic offers data scholars the unique opportunity, and perhaps obligation, to revisit and reinvent the fundamental concepts of our mediated experiences. The article critiques the data double, a longstanding concept in critical data and media studies, as incompatible with the current public health and social distancing imperative. The data double, (...) instead, is now the presupposition of a new data entity, which will emerge out of a current data shimmer: a long-sustaining transition that blurs the older boundaries of bodies and the social, and establishes new ethical boundaries around the activity and mobility of doing nothing to do something. The data double faces a unique dynamic in the COVID-19 pandemic between boredom and exhaustion. Following the currently simple rule to stay home presents data scholars the opportunity to revisit the meaning of data as something given, a shimmering embodied relationship with data that contributes to the common good in a global health crisis. (shrink)

This paper explores how consumers’ ethical food consumption practices, mediated by mobile phone applications (apps), are transformed into digital data. Based on a review of studies on the digitalization of ethical consumption practices and food apps, we find that previous research, while valuable, fails to acknowledge and critically examine the digital labor required to perform digitalized ethical food consumption. In this paper, we call for research on how digital labor underlies the digitalization of ethical food consumption and develop a conceptual (...) framework that supports this research agenda. Our proposed conceptual framework builds on three interconnected analytical concepts—datafication, affordances and digital labor—that enable the study of digital labor as an infrastructural element of digitalized food consumption. We illustrate our conceptual framework through our previous research concerning Buycott, a US-based mobile app whose stated aim is to facilitate consumers’ ethical purchasing decisions. Using the walkthrough method, we consider how the Buycott app engages user-generated data and what implications this holds for consumers. The app’s infrastructure, we suggest, connects ethical consumption and digital labor. A richer understanding of the digital food economy, we propose, enables social scientists not only to elucidate how consumers engage in digital labor, but also to contribute to the development of new data governance structures in the digital food economy. We therefore call for social scientists interested in food, consumption and the digital economy to contribute to a new research agenda for studying everyday food digitalization by empirically examining how ethical consumption apps implicate ethical consumers’ work. (shrink)

Precision medicine and digital phenotyping are two prominent data-based approaches within digital medicine. While precision medicine historically used primarily genetic data to find targeted treatment options, digital phenotyping relies on the usage of big data deriving from digital devices such as smartphones, wearables and other connected devices. This paper first focusses on the aspect of data type to explore differences and similarities between precision medicine and digital phenotyping. It outlines different ways of data collection and production and the consequences thereof. (...) Second, it shows how these sorts of data influence dominant beliefs in the field: The field of precision medicine relying on the dominant understanding of ‘genetic determinism’ imported from genetics, digital phenotyping building on the logic of ‘data fundamentalism’. In the end, the analysis shows how digital data informs potentials as well as challenges of precision medicine and digital phenotyping: a better health care for individuals connected with individualisation and responsibilisation for all, with a prognosed shift from reactive to preventive medicine. Additionally, data-based approaches might facilitate epistemological and ontological redirections for the whole field of medicine that will also affect knowledge production and a reassessment of the value of different types of knowledge with all its consequences. Institutionally, it might lead to shifts in distribution of power to experts in big data related technologies, i.e. private companies. (shrink)

This article discusses the datafied embodiment of the Internet of Bodies (IoB) technology by applying the methodology of postphenomenology. Firstly, the author claims that the boundaries of dual distinction between real and virtual, online and offline, and embodiment and disembodiment have become increasingly blurred. Secondly, the author argues that postphenomenology can help us to study today’s emerging technologies’ mediating role in human–world relations. Thirdly, the author analyses the implication of embodiment from phenomenological and postphenomenological perspectives and then demonstrates in what (...) sense the data collected from the IoB devices can constitute our embodiment and selfhood. Fourthly, the author elucidates how the IoB devices are datafying our bodies and the whole lifeworld and how these devices mediate and transform our religious practices and experiences. Fifthly, the author points out that the Quantified Religion as the possible new religious model would smooth out the differences and diversities between religions and then create homogeneous religious data selves, which will mediate, reshape, constitute and even replace our physical selves. Ultimately, the author argues that responsible designing of the IoB devices and establishing the ownership of personal religious data can be seen as significant measures in the face of the risk of our quantified religious future. Contribution: This article contributes to understanding the potential religious transformations caused by the IoB technology. This article analyses the mediating role the IoB technology plays in the relationship between humans and the world through a postphenomenological perspective, thereby explaining how body data harvested from the IoB devices can datafy and constitute our embodiment and selfhood. The article argues that the Quantified Religion as a new religious model will emerge in the future IoB era, and it will mediate, constitute and shape our religious practices and experiences through personal data harvesting and analysis. (shrink)

The notion of je ne sais quoi, whose rise characterises the decades in which the first scientific revolution marks a turning point in Western culture, tries to identify the human capacity for grasping what exceeds knowledge resulting from logos. But the further steps of the triumph of logos, starting from the second scientific revolution and its further developments, increasingly determine its fall. Moreover, th e recent history of Western culture may be read as follows: we have been increasingly entrusting our (...) understanding of what is and our prediction of what will be to an even more restricted form of rationality coinciding with logos, first, by progressively restricting logos to computation and, second, by progressively externalising computation from our minds to technologies, specifically algorithmic technologies. As such, should we think that computation is increasingly occupying the realm of je ne sais quoi by increasingly reckoning the unreckonable? The answer seems affirmative. In what follows, I shall critically focus on a promising case in point to try to understand the radical move from je ne sais quoi to computation: the case of the quantified self, which is addressed by medical humanities and sociology, but quite disregarded by philosophy – alternatively, I shall at least try to introduce the reasons why the case of the quantified self deserves a specifically philosophical study, starting from aesthetics and epistemology. (shrink)

The current research examines the emergent literature of Critical Data Studies, and particularly aligns with Michael and Lupton’s (2016) manifesto calling for researchers to study the Public Understanding of Big Data. The aim of this paper is to explore Irish stakeholders’ narratives on data sharing in agriculture, and the ways in which their attitudes towards different data sharing governance models reflect their understandings of data, the impact that data hold in their lives and in the farming sector, as well as (...) their preferences for how data should be governed within agriculture. Seven focus groups were held in 2019 with Irish stakeholders from a variety of backgrounds, including agri-researchers, those working in SMEs, and farmers of varying ages and sectors. The primary activities carried out during these focus groups centred upon asking participants to discuss four different data sharing governance models, and to work their way through a set of value cards relating to these models. Focus group results are studied using an inductive, data-driven form of thematic analysis (Braun and Clarke 2006). Five primary themes cross-cut these focus groups: 1) Desire for a data intermediary, 2) Reversing the value chain, 3) Categorisation of data, 4) The common good, and 5) Potential danger in data sharing. These themes are explored in the paper through a detailed discussion of the focus group results, in which the authors track the manifestation of these themes across focus groups, and the ways they sometimes morphed or changed depending upon the participating stakeholder group. (shrink)

As heritage-as-the-already-occurred folds into heritage-in-the-making practices, temporal and spatial fluidity is made more complex by digital mediation and particularly by Big Data. Such liveliness evokes ontological, epistemological and methodological challenges. Drawing on more-than-human theorizing, this article reframes the notion of data-bodies to advance data activist-oriented research in heritage. Focused primarily on women, it examines how their distributed agency and voice with respect to data practices and the makings of heritage could be amplified. I describe three methodological directions, influenced by feminist (...) work in critical data studies, which could be employed by researchers: attuning to and becoming with data, making data physical and changing narratives. From data-bodies to haunted data, performative data curation and mapping data-bodies, and attuning to data streams and re-voicing narratives, this article contributes to discussions of how to engage critically and creatively with the datafication of digital heritage practices, knowings and ontologies. (shrink)

This paper is concerned with everyday data practices, considering how people record data produced through self-monitoring. The analysis unpacks the relationships between taking a measure, and making and reviewing records. The paper is based on an interview study with people who monitor their blood pressure and/or body mass index/weight. Animated by discussions of ‘data power’ which are, in part, predicated on the flow and aggregation of data, we aim to extend important work concerning the everyday constitution of digital data. In (...) the paper, we adopt and develop the idea of curation as a theory of attention. We introduce the idea of discerning work to characterise the skilful judgements people make about which readings they record, how readings are presented, and about the records they retain and those they discard. We suggest self-monitoring produces partial data, both in the sense that it embodies these judgements, and also because monitoring might be conducted intermittently. We also extend previous analyses by exploring the broad set of materials, digital and analogue, networked and not networked, involved in record keeping to consider the different ways these contributed to regulating attention to self-monitoring. By paying attention to which data is recorded and the occasions when data is not recorded, as well as the ways data is recorded, the research provides specificity to the different ways in which self-monitoring data may or may not flow or contribute to big data sets. We argue that ultimately our analysis contributes to nuancing our understanding of ‘data power’. (shrink)

The phenomenon of the quantified self, which is especially addressed by sociology and medical humanities, is still quite disregarded by philosophy. Yet, the philosophical issues it raises are various and meaningful, from the realm of epistemology to the realm of ethics. Moreover, it may be read as a key symptom to investigate the complex technological era in which we live, starting from the meaning of contemporary technology itself from a philosophical perspective. I shall focus on one of the epistemological issues (...) raised by the phenomenon of the quantified self by arguing that it may be read in terms of epistemological anarchism, which also leads to other epistemological issues, such as a possibly detectable crisis of the notions of knowledge in general and science in particular as founded on the relationship between particularity and universality, as well as between reality and ideality. I shall select cases that are peculiarly representative of the founding epistemological stance I shall focus on. Yet, the reason why they deserve special attention is that they are also representative of an increasingly widespread attitude characterising not only the community of the quantified self but also, at least to some extent, anyone of us who may happen to use technologies to try to self-diagnose. (shrink)