Final Report Summary - OLGENOME (On-line Genomes between Personalized, Preventative and Participatory Medicine: A Biopolitical and Biosocial Analysis of Direct-to-Consumers Genetic Testing) The research On-Line Genomes between Preventive, Personalised and Participatory Medicine: A Biopolitical and Biosocial Analysis of Direct-to-Consumers Genetic Testing (OLGenoMe) investigated some innovative trends of healthcare through the analysis of a new generation of genetic testing, known as direct-‐to-consumers genetic testing (DTCGT).DTCGT can be bought directly on the Internet and provides information about personal susceptibility to widespread multifactorial (i.e. not only genetic) diseases. Merging the expansion of genomics that reduced the cost and time of DNA sequencing with the extensive diffusion of information technologies, DCGT is dramatically increasing the number of people who will get a genetic test. It thus contributes to popularize a large amount of health‐related genomic data, which can be shared and discussed on a growing number of web sites, blogs, and social networks specifically dedicated to genomics.Assuming a biopolitical and biosocial perspective, this research considered, 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 analysed biosocial interactions and digital subjectivities as instances of participatory medicine aimed at establishing new forms of cooperation between lay-people, patients, doctors, and researchers. Materials and methodsOLGenoMe explored these processes by conducting deep qualitative inquiry based on several methods: 1) semi-structured, in-depth interviews with 24 direct-to-consumer genetic testing users, with 10 so-called “genomic pioneers” who had their whole genome sequenced and who published their personal data, and with 8 members of the staff of the biotech firms providing this service working in this sector; 2) collection of second-hand literature about the experience of having our own genome sequenced, including press articles, blog posts, YouTube videos and published autobiographies where genomes play a crucial role; 3) a self-ethnography of the researcher as a DTCGT user, i.e. of having his own genome sequenced, and being an active member of several online platforms, including SNPedia, Promethease, OpenSNPs, Genomera. Major ResultsOn one hand, the popularisation of genomics seems to reinforce the privatisation 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. Apart from these processes, the research also shed light on the rather unexplored phenomenon of the leisure of personal genomics. In spite of the ethical concerns about direct-to-consumer personal genomics tests, people do these tests for a wide set of reasons that go well beyond “clinical utility”. As a result, a more inclusive understanding of utility and value of “personal genomes” has the effect of foregrounding wider social, cultural and political aspects than have been dominant in the ethical and regulatory debates surrounding DTC genetics so far. These unexplored dimensions are considered crucial to understand the issues at stake with the spreading of personal genomics. Dr Turrini's research being of interest for both social scientists and health professionals, he discussed his results at each step of this inquiry. In particular, the international conference on Healthism that he co-organized in December 2014 at Sorbonne University provided a stage for discussions between many concerned actors (medical doctors, policy makers, social scientists, philosophers, anthropologists...)
