Keeping data alive: Talking DTC genetic testing

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Sammanfattning

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.

Originalspråkengelska
TidskriftInformation, Communication and Society
Volym20
Utgåva7
Sidor (från-till)1024-1039
Antal sidor16
ISSN1369-118X
DOI
StatusPublicerad - 2017
MoE-publikationstypA1 Tidskriftsartikel-refererad

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