IP is the bulwark against self-determination—ipr structures discipline citizen demands towards neoliberal ends

Eva, phD candidate at the University of Sussex. “Intellectual Property and the Genetic Dispositif of Life: The Changing Role of Intellectual Property Law in Governing Participation and Knowledge in the Bioeconomy.” Submitted for the Degree of Doctor of Philosophy University of Sussex, May 2015. Pp 137-140. LJS

The “molecularisation” of life (see for example Novas and Rose 2000) shifts the understanding of the ‘nature’ of the subject to a different level, marking a shift of the medical gaze similar to the change in the eighteenth century (see N. Rose 2007b, 4 f.), changing “[n]ot only the names of diseases, not only the grouping of systems were not the same; but the fundamental perceptual codes that were applied to patients’ bodies” (Foucault 1963, 64). Novas & Rose term these molecularised concepts of life and of disease a “new ‘molecular optics’” (2000, 48), while Heath, Rapp & Taussig refer to the development of new forms of self-understanding of the individual, adapting to the new ‘truth’ about his/her medical destiny contained in his/her genetic code as “a genetic ‘micro-anatomo-politics’” (2004, 154). Importantly, Novas and Rose point out that “[t]hese developments [...] re-shape the ways in which we are governed, and the ways in which we govern ourselves”, “creat[ing] an obligation to act in the present in relation to the potential futures that now come into view” (Novas and Rose 2000, 486). This obligation to act in the present according to the demands of potential futures “come[s] into an association with all the other shifts that are assembling somatic individuality, with the norms of enterprising, self-actualizing, responsible personhood that characterize ‘advanced liberal’ societies” (Ibid., 488). Subjects are thus incited to operate with reference to these connected identities (or modes of subjectification) of the genetic and enterprising individual. In contrast with Novas and Rose’s focus on the individual, Raman and Tutton stress that the influence of the life sciences does not only amount to a ‘disciplining’ of the individual’s conduct, but still remains connected to knowledge generated at the level of the population (Raman and Tutton 2010, 721). Critiquing notions of a wholesale transformation of Foucault’s “old biopolitics from above” to a “new biopolitics from below”, they argue that “truth discourses about life contain a hybrid of molecular and population categories” (Ibid., 722). Thus “old” and “new” modes of biopolitics coexist in the molecular age, giving rise to population-based governmental interventions such as national biobanks and “strategies for infection control”, as well as a new “pastoral or enabling” role of the state (Ibid.). At the heart of a new biopolitics “from below”, the concept of biological citizenship (or genetic citizenship)66 encapsulates the rights claimed by the active patient within this new somatic ethics. Based on the biological condition of the entrepreneur of the self, these rights have the potential to challenge governance and health providers, “[articulating] claims to participation in social and political life and to the recognition of certain individuals’ or groups’ identities, expertise and specific needs based on their (supposedly) biological or genetic conditions” (Wehling 2011, 225).67 In particular, “these practices challenge conventional notions of a divide between lay people and experts” (Heath, Rapp, and Taussig 2004, 152). While Novas (2006) and Rose (2007b) respectively emphasise the power of ‘hope’ in generating demands made by patients and patient organisations, Wehling cautions against overstatements in this direction by drawing attention to the contrast between new demands and the amount of new responsibilities imposed on the individual “to optimize ‘healthy’ bodies and minds” (Wehling 2011, 227). The clearest examples of biological citizens are for instance patient groups, which are formed around a common genetic condition (such as Huntington’s disease or PXE). These patient groups can organise support for their condition more effectively and make more successful demands for research on that condition than any individual patient would be able to make. They can liaise with pharmaceutical companies and serve as research repositories for them, which also can improve the amount of research done with regards to their particular condition. Patients of more complex diseases such as arthritis and diabetes are also increasingly organising in this way (Heath, Rapp, and Taussig 2004, 159). At its most successful point, this activation of patients has the potential to radically reverse the roles between experts and patients, as Novas & Rose find: “the ill patients themselves, those ‘asymptomatically ill’ and their families [...] are increasingly demanding control over the practices linked to their own health, seeking multiple forms of expert and nonexpert advice in devising their life strategies, and asking of medics that they act as the servants and not the masters of this process” (Novas and Rose 2000, 490).68 However, this radical potential is limited by the simultaneously increasing moral duties of the individual, as Wehling points out. Most critically, the mobilising influence of hope for new treatments further essentialises conceptions of ‘good’ patients, which actively participate in pharmaceutical trials and the formation of biobanks etc., and thus are contributing to the generation of knowledge – but also of economic value. In particular, “deeply emotional representations of the fears and hopes of sufferers, and their expectations that new medical technologies will deliver them from their suffering, structure many popular representations of patients and their illnesses, and are often deployed by medical charities, support groups and others in seeking to raise funds to keep that hope alive.” (N. Rose 2007b, 136, quoting from Nik Brown) The power of hope thus not only gives rise to biopolitical challenges, but also engenders subjectivities that contribute to the production of economic value. The invocation of the power of biological citizens is in this way tempered by an “‘elective affinity’ between the spirit of biocapital and our contemporary somatic ethic” (N. Rose 2007a, 5). The remainder of this chapter argues that IP is central to the management of this “elective affinity” and contributes to the governing of demands made by patients by maintaining a division between the realm of economic relations and the biopolitical challenge of active patients. This exclusionary function prevents the bioeconomy from being affected by a potentially radical role reversal between patients and experts. The next section of this chapter shows how the IP regime maintains a separate sphere of (bio)economic value by structuring the participation of active patients (or biological citizens) in this area. While alternative models of participation are explored in examples of citizens’ science, an analysis of debates around participation by “research patients” or “research citizens” shows how the demands of genetic citizens are being controlled. While patients are increasingly incited to fulfil a new responsibility of voluntary participation in trials and research, the bioeconomy still functions by remaining largely closed off from decisive influence exerted by patients on the use of donated materials in Rose’s “transnational circuits of vitality” (N. Rose 2008a, 46). This management of biopolitical challenges “from below” (Raman and Tutton 2010, 722) is then also traced in emerging challenges to the exclusionary function of IP in an international version of a “new moral economy of R&D” (Lezaun and Montgomery 2015, 5) – representing an international version of the “biopolitics from above”.