Keeping data alive : Talking DTC genetic testing

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Ruckenstein , M S 2017 , ' Keeping data alive : Talking DTC genetic testing ' , Information, Communication and Society , vol. 20 , no. 7 , pp. 1024-1039 .

Title: Keeping data alive : Talking DTC genetic testing
Author: Ruckenstein, Minna Susanna
Contributor organization: Centre for Consumer Society Research
Department of Political and Economic Studies (2010-2017)
Date: 2017
Language: eng
Number of pages: 16
Belongs to series: Information, Communication and Society
ISSN: 1369-118X
Abstract: 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.
Subject: 518 Media and communications
lively data, lifeworld inc., direct-to-consumer genetic testing, communicative affordances
Peer reviewed: Yes
Rights: cc_by_nc_nd
Usage restriction: openAccess
Self-archived version: acceptedVersion

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