Keeping data alive: talking DTC genetic testing

Minna Ruckenstein

doi:10.1080/1369118x.2016.1203975

Abstract

ABSTRACTDirect-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 gain 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.

Highlights

Direct-to-consumer (DTC) genetic testing has been discussed and critiqued from perspectives that include biomedical, commercial, ethical, legal, regulatory, and participatory stances
Important to attend to how people work ‘off the inhabitable map’ – how they doubt and refute the framings offered by 23andMe – and to trace how alternative frameworks of interpretation are applied to the test results, contributing to perceptions of what is accorded significance in terms of genetic knowledge and people’s lifeworlds
By taking advantage of the lively data approach, emphasizing how thematic clustering in transmitted talk aids and speeds the sharing and circulation of findings based on personal data, this study has offered insights into the relationship of ordinary people with personal data and data practices, paving the way for further exploration of everyday data relations

Summary

Introduction

Direct-to-consumer (DTC) genetic testing has been discussed and critiqued from perspectives that include biomedical, commercial, ethical, legal, regulatory, and participatory stances. Important to attend to how people work ‘off the inhabitable map’ – how they doubt and refute the framings offered by 23andMe – and to trace how alternative frameworks of interpretation are applied to the test results, contributing to perceptions of what is accorded significance in terms of genetic knowledge and people’s lifeworlds.

Results

Conclusion