Practicing the biomedicine to come: Direct-to-consumer genetic testing, healthism and beyond

Abstract : As a device aimed at expanding the medical discourse by empowering patients, direct-to-consumer genetic tests (DTC GT) represent an ideal case to study through the prism of healthism. Indeed, this critical theory has anticipated many of the issues that the last generation of consumer personal genomics services have raised in the late 2000s. In particular, it frames the unnecessary anxiety that these diagnostic devices with a low or absent clinical utility may engender in a broader critical understanding of the spreading of medical rationality into everyday life. Giving access to health-related data bypassing any medical mediation is a way to normalize and discipline laypeople, even those who are not ill, by charging the responsibility for their own health. At the same time, the ethnographic analysis of users' practices sheds light on the limits of healthism. Rather than generating new forms of responsibility and duties, users approach personal genomic data with curiosity and irony. The indeterminacy of this information, too, is not seen uniquely as the cause of a low clinical utility, but also as something that makes it to interpretation, circulation and combination. Personal genomic data are a means of a (potentially endless) discovery of one's own genetic self and kinship. In addition, the body fragmented in bio-data can be mobilized and recombined through Internet, as shown emblematically by the practice of " sharing the personal genome " , which is used as a means to take part to new biomedical practice and even research initiatives. If healthism can be used as a critical framework of a " post-disciplinary " medicine spontaneously adopted by laypeople, it has not anticipated the meanings and practices related to the production and sharing of huge amount of bio-data, especially in terms of active participation in a possible model of future medicine.
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Mauro Turrini. Practicing the biomedicine to come: Direct-to-consumer genetic testing, healthism and beyond. Eä - Journal of Medical Humanities & Social Studies of Science and Technology, 2015, Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology (part 2), 7 (2), pp.49-69. ⟨http://www.ea-journal.com/en/issues/2016-04-01-01-25-43⟩. ⟨hal-01350628⟩

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