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New Genet Soc. 2014 Mar;33(1):60-78. Epub 2014 Mar 7.

Autobiologies on YouTube: Narratives of Direct-to-Consumer Genetic Testing.

Author information

1
Technology and Society Studies Department, Faculty of Arts and Social Sciences, Maastricht University, Maastricht, The Netherlands.
2
ESRC Centre for Genomics in Society, University of Exeter, Exeter, UK.

Abstract

Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become "patients-in-waiting." In the videos analyzed, we found a new form of storytelling about this ambiguous state of illness, which we refer to as autobiology. Autobiology - the study of, and story about, one's own biology - concerns narratives of sense-making through forms of biological practice, as well as wayfaring narratives which interweave genetic markers and family histories of disease. These autobiologies - part of a broader shift toward public stories about genetics and other healthcare technologies - exhibit playfulness, as well as being bound with consumerist practices.

KEYWORDS:

direct-to-consumer; genetic testing; narrative analysis; new media

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