Concerns, benefits and issues with personal genomics online
DTCGT is providing information about personal susceptibility to diseases including cancer and heart disease without the involvement of a health care agent. Multifactorial and therefore with a lifestyle component as well as a genetic basis, online genetic testing is dramatically increasing the number of people who will seek genomic advice and participate in other online forums and blogs. The OLGENOME (On-line genomes between personalized, preventative and participatory medicine: A biopolitical and biosocial analysis of direct-to-consumers genetic testing) project performed an in-depth qualitative study with user interviews and data from a wide range of literature. Interviewees included 24 DTCGT users with ten so-called “genomic pioneers" who published details of their whole genome personal data, and eight members of staff from biotech firms offering this service. Media reports from users of DTGCT were also analysed and took in articles, blogs and YouTube videos. Lastly, the OLGENOME project became a DTCGT subject and became an active member of online platforms such as SNPedia and Promethease. Research results indicate an inherent duality on the use of personal genomic testing. On one hand, popularisation of these tests drives the compulsion of the need for perfect fitness, possibly using useless information. However, DTCGT testing is just one aspect of a general movement to empower the patient. The work of the OLGENOME project has taken into account the fact that the public have many reasons for doing these tests that go far beyond the possession of finding out beneficial or detrimental genes. The study therefore has raised the issue to a far higher level, where previously unexplored dimensions of wider social, cultural and political aspects may have a major impact. The study encompasses interest from the social science and biological arenas, the results of the project were discussed at a conference in Sorbonne University on Healthism. Representative of a wide range of academic areas, the participants included medical doctors, policy makers, social scientists, philosophers and anthropologists.
Keywords
Personal genomics, DTCGT, OLGENOME, user interviews, media reports
