Googling your genes: personal genomics and the discourse of citizen bioscience in the network age

Abstract

In this essay, I argue that the rise of personal genomics is technologically, economically, and most importantly, discursively tied to the rise of network subjectivity, an imperative of which is an understanding of self as always already a subject in the network. I illustrate how personal genomics takes full advantage of social media technology and network subjectivity to advertise a new way of doing research that emphasizes collaboration between researchers and its members. Sharing one’s genetic information is considered to be an act of citizenship, precisely because it is good for the network. Here members are encouraged to think of themselves as dividuals, or nodes, in the network and their actions acquire value based on that imperative. Therefore, citizen bioscience is intricately tied, both in discourse and practices, to the growth of the network in the age of new media.

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

“…Users are invited to upload individual data gathered from smartphone applications to contribute to projects ranging from studies of vitamin deficiencies to telomerase activation and social intelligence (DIYgenomics, 2015a). In capitalizing on social media technology and the growing imperative to share information about oneself with online communities, PDGR is constructing new niches for active biological citizenship, a means of finding political, social, and other affinities with others on the basis of shared biological characteristics (e.g., genetic, disease status) (Levina, 2010;Rose and Novas, 2005).…”

“…Meanwhile, the landscape of genomic research is changing again, in ways that challenge the professional culture of science from a distinctly different direction. The intermingling of academic and commercial genomic research platforms, political patient advocacy, advances in Web 2.0 technologies, 'citizen science,' electronic personal health monitoring, open-access and open-source cultures -all within an age of social networking and the corporate university Kelty, 2010;Levina, 2010) -has given rise to new forms of translational genomic research. While researchers in these domains often cite the same translational efficiencies, communitarian values, and civic virtues espoused by contemporary genome science, they do so to support efforts to liberate and de-institutionalize genomic research from the conventional scientific community altogether, and place it into the hands of consumers, patients, and citizens to promote the design and conduct of genomic research through the use of interactive, dynamic, and web-based tools to enroll participants, gather, manage, and analyze data, and distribute findings.…”

Activist Media and Biopolitics: Critical Media Interventions in the Age of Biopower

“…While for CAE, the goal was to enable people to challenge the capitalist face of Big Bio by providing conceptual and political tools, in some biohackers' view, participation could help overcome some of the problems faced by Big Bio itself. There is an ambivalence, though, with respect to the political and economic role of this sharing: is it going to be part of an expropriated gift economy (Barbrook, 1998;Levina, 2010) or rather a resistance against the intellectual property rights enclosures that sustain Big Bio monopoly power? The biocitizenship imagined by DIYbio includes very different features, and the answer to the question is not clear among garage biologists.…”

“…Distributed social production has already proven to be enormously productive in many fields of knowledge and DIYbio claims a positive change accompanied by a redistribution of power. Big Bio will have to take into account amateurs' needs and interests, as companies and scientific institutions are asking citizens to contribute by crowd-sourcing knowledge, sharing and analysing data, or performing scientific research (Delfanti, 2010;Hope, 2008;Levina, 2010).…”

Bionetworking over DNA and biosocial interfaces: Connecting policy and design

“…25 Bionetworking subjects, Levina argues, are just the most recent form of "networked subjectivity" and products of the "control society" that defines the present neoliberal condition. The STS notions of "biological citizenship" and "political economy of hope" 26 are just forms of consumer behavior in a fully networked society operating within the "free labor paradigm.…”