When it comes to sharing personal information on the Internet, the first thing that comes to mind is the privacy issue. We’ve all frowned upon Facebook’s initial opt-out policies and many of us have shown half-hearted concert when discussing Google’s craving of personal data with our media-studying friends. But, along with the growing preoccupation about the monopolization of such information, the so-called web2.0 has also witnessed an increasing digitization of deeply personal data on a voluntary basis. I’m not talking about our taste in music, movies and causes, but health and genomic information. The stuff of our physical being, so to speak.
There are a couple of reasons why more and more people feel like putting these types of data online. First of all, some want to keep track of their health record, in order to own it and facilitate its migration from a health provider to another. When Google Health was launched in 2008, other platforms providing this kind of service already existed, like Microsoft Health-Vault and Revolution Health, by AOL-co-founder Steve Case. Obviously there was some level of controversy, given Google’s reputation as a data-hungry company and its freedom from the HIPPA obligation, but privacy concerns were hardly the reason why the service has been axed – and will eventually disappear in 2012 – since the application had its share of advocates.
Citizen bioscience and consumer genomics
Apart from health records, genomic data has been at the core of important and exciting developments in both the self-obsessed world of social networks and the scientific community. This has given way to the recent growth of two intersecting fields: citizen bioscience and consumer genomics. Both share the deployment of user-generated data – a lesson learned from the dynamics of web 2.0 – and the common tendency to de-institutionalize scientific research.
Citizen bioscience is exemplified by non-profit, crowd-sourced endeavors like DIYGenomics and the Personal Genome Project, which try to bridge an online community of genetics enthusiasts with scientists and scholars. Apart from practicing a more “wikified” research, these efforts aim at creating a more genome-aware citizen, responsible of his/her own code and willing to share it in order to learn from it.
Consumer genomics is the corporate side of the field and, for this reason, the most controversial. You have probably heard of 23andMe, a company co-founded by Anne Wojcicki – married to Google’s Sergey Brin – and famous for decoding your genome from a saliva sample, for a fast-dropping fee. When the service was launched it cost as much as 1000$, now it has hit 99$ and will probably fall lower in the coming years. Helped by a well-styled website and merchandising – like “I spat!” pins and so on – the company has been able to tap on the growing interest in genomic information to build a profitable business, also legitimated by its involvement in the publication of scientific papers. If you go read my interview with CESAGen researcher and author of The Genome Incorporated Kate O’Riordan you’ll find a more detailed discussion on the matter. Our talk included considerations about the actual utility of the information provided by the company for the consumers and a few guesses of mine about unlikely and dystopic scenarios for the near future.
We can imagine these phenomena might have long-term consequences on certain aspects of society. In her presentation at a recent MIT conference, University of Memphis’ Marina Levina outlined the traits of a Biocitizenship 2.0, a condition “embedded in the ‘free-labor’ economy of the network society” where people are empowered by both a more accessible scientific information and a new economic control over their genomic data. If consumer genomics is already promising “freedom from institutional power through corporation-enabled control over one’s genetic information”, for people to make money off their DNA information the actual pay-per-spit paradigm should be reversed. Given the growing interest in the fields mentioned and the fast-paced digitization of everything human, probably we won’t have to wait too long to see what happens.