Keeping data alive : Talking DTC genetic testing

Direct-to-consumer (DTC) genetic testing has been discussed and critiqued from perspectives that include biomedical, commercial, ethical, legal, regulatory, and participatory stances. This study adds a perspective that emphasizes the ‘liveliness of data’ and treats 23andMe genetic tests as part of an expanding self-tracking market that shapes communication, social life, and identities. In demonstrating how ‘gene talk’ aids and speeds the circulation of findings based on personal data, the discussion cast light on how personal data gains value in people’s lives, thereby enhancing their readiness to position themselves as data subjects. Users are offered a data-enhanced existence, a ‘lifeworld inc.’, in which new kinds of ontological horizons are promoted by technical developments that produce numbers and calculable coordinates for descriptive regimes. Arguing that debates on DTC genetic testing and uses of personal data benefit from a more thorough analysis both of translations of genetic knowledge and emerging data practices, the aim is to critically address the active work by users that keeps genetic data alive, including the emotional longings and practical capabilities that people have in terms of genetic knowledge. Through a more comprehensive framework, recognizing the lively nature of genetic data, we can reveal how genetic testing services promote knowledge formation that mixes intimate and larger-scale social and economic contexts.Peer reviewe

Living the metrics : Self-tracking and situated objectivity

This paper evaluates self-tracking practices in connection with ideas of objectivity via exploration of confrontations with personal data, particularly with reference to physiological stress and recovery measurements. The discussion departs from the notion of ‘mechanical objectivity’, seeking to obtain evidence that is ‘uncontaminated by interpretation’. The framework of mechanical objectivity tends, however, to fall short when people translate physiological measurements to fit their expectations and everyday experiences. We develop the concept of ‘situated objectivity’ with the goal of highlighting the everyday as a domain of interpretation, reflection and ambiguity, proposing that the concept offers an analytical entry point to a more profound understanding of how people engage with their personal data. Everyday data encounters are not methodical and systematic, but combine knowledge in an eclectic manner. Framed in this way, self-tracking practices are less occupied with ‘facts of life’ than translating and transforming life based on earlier experiences, cultural understandings and shared expectations. Paradoxically, new measurement devices and software, which are supposed to be based on sound, universal and generalisable principles, hard facts and accurate descriptions, become raw material for daily decisions, as people seek bespoke answers and craft personalised theories of health and life. From this perspective, self-tracking measurements can be used to experiment and learn, gaining value in relation to the communicative processes that they promote and contributing to possibilities for rethinking health knowledge and health promotion.Peer reviewe

Uncovering everyday rhythms and patterns : Food tracking and new forms of visibility and temporality in health care

This chapter demonstrates how ethnographically-oriented research on emergent technologies, in this case self-tracking technologies, adds to Techno-Anthropology’s aims of understanding techno-engagements and solving problems that deal with human-technology relations within and beyond health informatics. Everyday techno-relations have been a long-standing research interest in anthropology, underlining the necessity of empirical engagement with the ways in which people and technologies co-construct their daily conditions. By focusing on the uses of a food tracking application, MealLogger, designed for photographing meals and visualizing eating rhythms to share with health care professionals, the chapter details how personal data streams support and challenge health care practices. The interviewed professionals, from doctors to nutritionists, have used food tracking for treating patients with eating disorders, weight problems, and mental health issues. In general terms, self-tracking advances the practices of visually and temporally documenting, retrieving, communicating, and understanding physical and mental processes and, by doing so, it offers a new kind of visual mediation. The professionals point out how a visual food journal opens a window onto everyday life, bypassing customary ways of seeing and treating patients, thereby highlighting how self-tracking practices can aid in escaping the clinical gaze by promoting a new kind of communication through visualization and narration. Health care professionals are also, however, acutely aware of the barriers to adopting self-tracking practices as part of existing patient care. The health care system is neither used to, nor comfortable with, personal data that originates outside the system; it is not seen as evidence and its institutional position remains insecure.Peer reviewe

The datafication of health

Over the past decade, data-intensive logics and practices have come to affect domains of contemporary life ranging from marketing and policy making to entertainment and education; at every turn, there is evidence of “datafication” or the conversion of qualitative aspects of life into quantified data. The datafication of health unfolds on a number of different scales and registers, including data-driven medical research and public health infrastructures, clinical health care, and self-care practices. For the purposes of this review, we focus mainly on the latter two domains, examining how scholars in anthropology, sociology, science and technology studies, and media and communication studies have begun to explore the datafication of clinical and self-care practices. We identify the dominant themes and questions, methodological approaches, and analytical resources of this emerging literature, parsing these under three headings: datafied power, living with data, and data–human mediations. We conclude by urging scholars to pay closer attention to how datafication is unfolding on the “other side” of various digital divides (e.g., financial, technological, geographic), to experiment with applied forms of research and data activism, and to probe links to areas of datafication that are not explicitly related to health.Peer reviewe

Broken data : Conceptualising data in an emerging world

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.Peer reviewe

Lääketutka - Löytöretkeilyä ihmisten keskusteluihin omasta terveydestään

Peer reviewe

Suomi24 : muodonantoa aineistolle

Tässä raportissa luodaan katsaus Suomi24-keskustelufoorumin aineistoon, joka on ollut saatavilla Kielipankissa keväästä 2015. Raportissa kuvataan aineiston syntytapaa ja kontekstia, eli Suomi24-informaatioarkkitehtuuria, aineiston määriä ja luonnetta, aineiston tallennusmuotoja, ja tapoja, joiden avulla tutkija voi aineistoon perehtyä. Lisäksi viritetään esimerkinomaisesti tutkimuksellisia näkökulmia, joihin aineistotyöskentelyllä voisi edetä. Digitaalisten tekstiaineistojen laajamittainen yhteiskuntatieteellinen tutkiminen on vasta aluillaan. Raportti tarjoaa taustan, jota vasten laajasta aineistosta tehtyjen yksittäisten hakujen tuloksia voi suhteuttaa ja tulkita. Lisäksi aineiston käyttöesimerkkien ja erilaisten lähestymistapojen esittely voi tarjota virikkeitä aineiston hyödyntämiselle omassa tutkimuksessa. Aineistoraportin tavoitteena on tuoda esille kvantitatiivisen ja kvalitatiivisen aineistotutkimuksen mahdollisuuksia. Toivon mukaan näihin tarttuminen voi myös edistää analyysityökalujen kehittymistä tavalla, joka palvelee entistä paremmin paitsi eri tieteenalojen tutkijoita, myös journalisteja ja aiheesta kiinnostuneita kansalaisia