On-line Genomes between Personalized, Preventative.. (OLGENOME)
On-line Genomes between Personalized, Preventative and Participatory Medicine: A Biopolitical and Biosocial Analysis of Direct-to-Consumers Genetic Testing
Start date: Sep 1, 2013,
End date: Aug 31, 2015
The research proposal intends to investigate the emerging field of personalized, preventative and participatory medicine through the analysis of a new generation of genetic testing, known as direct-to-consumers genetic testing (DCGT). DCGT can be bought directly on the Internet and provides information about personal susceptibility to widespread multifactorial (i.e. not only genetic) diseases. Merging the advancement of molecular genetics in reducing the cost and time of DNA sequencing with the extensive diffusion of information technologies, DCGT is dramatically expanding the number of people who will get a genetic test. It is thus popularizing a large amount of health-related genomic data, which can be shared and discussed through a growing number web sites, blogs, and social networks specifically dedicated to genomics.Assuming a biopolitical and biosocial perspective, this research will consider, first, the capacity of DCGT to disseminate the logic of genomic risk and susceptibility in our daily life, by turning DCGT users in “asymptomatic patients” who intervene on their own bodies, thoughts, conducts and lifestyles by actively taking and demanding responsibility from their own medical futures (and those of their families and groups). Second, it will analyse biosocial interactions and digital subjectivities as instances of participatory medicine aimed at establishing new forms of cooperation between laypeople, patients, doctors, and researchers.On one hand the popularization of genomics seems to reinforce the privatization of care and thus threat universal health care by instilling the compulsion for perfect fitness with imprecise and/or pointless information. On the other it could empower patients and laypeople, letting them to be more actively involved in healthcare and biomedical research. This project intends to conduct deep qualitative research into the practices that inform these possibilities.
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