Keeping data alive: talking DTC genetic testing

Ruckenstein, Minna

doi:10.1080/1369118x.2016.1203975

Cited by 29 publications

(23 citation statements)

References 32 publications

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“…There is a growing academic interest in anxieties about data security, surveillance and power (e.g. Barassi, 2017;Dencik et al, 2017) and in how people use and experience self-tracking technologies (Lupton, 2016;Fors, 2017a, 2017b;Ruckenstein, 2016). This literature provides insights into how personal data is created, and used by individuals and organisations.…”

Section: Introductionmentioning

confidence: 99%

Data anxieties: Finding trust in everyday digital mess

2018

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Digital data is an increasing and continual presence across the sites, activities and relationships of everyday life. In this article we explore what data presence means for the ways that the everyday is organised, sensed, and anticipated. While digital data studies have demonstrated how data is deeply entangled with the way in which everyday life is lived out and valued, at the same time our relationships with data are riddled with anxieties or small niggles or tricky trade-offs and their use is often chaotic and muddled, part of the inevitable uncertainty about what will happen next. If the presence of data is part of the environments we inhabit, this raises the question of how and why data is valuable to us and what forms of hope and trust enable this value to further develop.

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Section: Introductionmentioning

confidence: 99%

Data anxieties: Finding trust in everyday digital mess

2018

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“…Research on 23andMe consumers has observed that they were ‘savvy’ about the limitations of the tests (McGowan et al . ) or sceptical of the results (Ruckenstein ), although these studies did not explore how users engaged with the platform. We recently observed that ordinary or casual users of MyFitnessPal calorie counting app did not use its advanced features (retrospective data, forums) and used it temporarily to lose weight (Didžiokait≐ et al .…”

Section: Discussionmentioning

confidence: 99%

Digital health – a new medical cosmology? The case of 23andMe online genetic testing platform

Saukko

2018

Sociology Health & Illness

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This article argues that commercial digital health platforms and devices commodify participatory features of the digital creating a new medical cosmology. Drawing on sociology on medical cosmologies, research on digital media and marketing and an analysis of the 23andMe online genetic testing platform, I identify three features of this cosmology. First, digital health seeks to foment 'flow' or enjoyable, continuous immersion in health. Second, digital health configures its consumers as 'co-creators' of health data and knowledge together with companies and other consumers. Third, digital health frames medical knowledge as tentative, up for revision and scepticism by expert and lay science. The way in which digital health configures consumers as immersed, creative and sceptical gives it an open-ended and participatory air. However, the conceptual discussion and the analysis of the 23andMe platform highlight that these features represent commercial capture of the lifeworld, even if they appear radical against classical medical cosmologies.

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“…Given the increasing dependency in everyday life on data-driven applications, a better understanding of the consequences of data brokenness in the fields ranging from finance and insurance to health and education is called for (Ruckenstein and Schu¨ll, 2017). Explorations that demonstrate who gives data life, and how it is kept alive and for what purposes, offer insights into data practices, paving the way for further exploration of data work and everyday data relations (Lupton, 2016;Ruckenstein, 2017). In the case of Suomi24 data, the data breakages suggest that we need to actively question data production and the diverse ways in which data is adapted for different ends by practitioners.…”

Section: Repairing Social Media Datamentioning

confidence: 99%

Broken data: Conceptualising data in an emerging world

et al. 2018

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In this article, we introduce and demonstrate the concept-metaphor of broken data. In doing so, we advance critical discussions of digital data by accounting for how data might be in processes of decay, making, repair, re-making and growth, which are inextricable from the ongoing forms of creativity that stem from everyday contingencies and improvisatory human activity. We build and demonstrate our argument through three examples drawn from mundane everyday activity: the incompleteness, inaccuracy and dispersed nature of personal self-tracking data; the data cleaning and repair processes of Big Data analysis and how data can turn into noise and vice versa when they are transduced into sound within practices of music production and sound art. This, we argue is a necessary step for considering the meaning and implications of data as it is increasingly mobilised in ways that impact society and our everyday worlds.

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Keeping data alive: talking DTC genetic testing

Cited by 29 publications

References 32 publications

Data anxieties: Finding trust in everyday digital mess

Data anxieties: Finding trust in everyday digital mess

Digital health – a new medical cosmology? The case of 23andMe online genetic testing platform

Broken data: Conceptualising data in an emerging world

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