Injunctions are a biopolitical tool—they govern at a distance by getting citizens to discipline themselves

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 141-144. LJS

Kerr points out that rights and obligations are already contained within the concept of citizenship, understanding “citizenship as a set of inter-linked processes of inclusion and exclusion of individuals based on the allocation of entitlements, obligations and immunities, which depend upon notions of their contribution to society” (Kerr 2003a, 45). However, participatory rights are not the same for experts and citizens. Experts are involved in patients’ decision-making on the personal level (with regards to genetic testing or participation in biobanks) and also contribute to policy-making. In contrast, patients or citizens “are not considered to be sufficiently competent to make a significant contribution to this [policy-making] process. Their rights in this arena are therefore limited, but their responsibilities for self-education and self-surveillance remain” (Kerr 2003b, 221). This division between citizens and experts can be seen for example in the structures of UK Biobank, in which the role of the citizen was set up as “one of self-surveillance and information provision to clinicians rather than as members of any independent overseeing body” (Ibid., 218; see also discussion in Dickenson 2013, 187). In contrast, some other governments consult citizens, for example for Denmark’s biobank or in EU policy making, where patients “help [...] formulate research and ethics policy” (Heath, Rapp, and Taussig 2004, 165; see also discussion at the beginning of this chapter). At best, the involvement of patients/ citizens stretches towards this consultative role, while their general responsibilities have increased, including self-surveillance, involvement in research activities, and the donation of information and samples. The divide between the role of the citizen and the realm of science and the bioeconomy is maintained by institutionalised specialist knowledge, in spite of patients’ increased expertise of their own conditions. Rose and Miller point to the constitutive role of expertise in “advanced liberalism”, where they enable the economy of governing as little as necessary by maintaining the public/private divide (N. Rose 1993; Miller and Rose 2008). In this, experts fulfill a double function: on the one hand “[experts] would ally themselves with political authorities [...] translating political concerns [...] into the vocabulary of management, accounting, medicine [...]”, while also “[o]n the other hand, they would seek to form alliances with individuals themselves, translating their daily worries [...] into a language claiming the power of truth, and offering to teach them the techniques by which they might manage better [...]” (N. Rose and Miller 2010, 206). The discussion in the previous section on the subversive potential of biopolitical challenges showed that this use of the language of truth can contain the potential for challenge to the political discourse, but it also instils “self-regulatory techniques [...] in citizens that will align their personal choices with the ends of government” (Ibid.). As the previous chapter argued, IP normalises specialist knowledge and elevates a particular vision of life over other, more complex versions. In addition to this, the area of IP law needs to be understood as a very specialist area of knowledge itself, which has high entry barriers contained in specialist legal knowledge of IP procedures and in high costs for registration and enforcement of rights. These requirements make it necessary for IP holders to be highly organised and to have sufficient funds for the maintenance of their rights. Specialist lawyers are often required for the actual registration procedure of IPRs – which, in a similar way to medical experts, translate the applications of individuals “into a language claiming the power of truth” and also work with authorities overseeing the area of IP policy, translating policy preferences into the language of IP management. These structures align choices over directions of research with the ends of the IP system – through “self-regulatory techniques” incited by patentability criteria. These criteria ensure the economic utility of research outcomes and enable IP to “govern at a distance”. The specialist area of IPRs thus can be understood as fulfilling the function of experts in the governing of the problematization of life, translating concerns and inciting appropriate behaviour of subjects. In this, IPRs are also instrumental in maintaining the division between the public area of direct government intervention, and the private area in which the priorities of governmentality “govern at a distance”. Criteria for economic utility of research conduct the conduct of IP holders. But importantly, the high hurdles for participation in the IP regime towards all other subjects need to be understood as part IP’s governing of life as well. Examples of challenges by active “biological citizens” show that they are either given the option of using IP themselves (as in the case of PXE), or of participating in a research project by signing a blanket consent form transferring all rights – and thus being entirely excluded from IP. In this way, IP continues to structure the participation of “active” patients in decisions on the further use of information derived from their donation, especially for economic purposes – thus shielding this area from challenges posed by active citizens who may seek to use genetic information for other purposes. This is where the tactical dimension of IP’s role becomes apparent, which maintains the operation of economic circuits of exchange while challenges based on genetic conceptions of life are being kept at bay. The increasing relevance of genetic knowledge as part of the genetic dispositif also intensifies the tactical dimension of this division. IP’s role establishing control over research agendas and economic use of donations needs to be interrogated as a separate power exercise to that of the “commodification” of life. The increasingly tactical use of IPRs as a regime for exclusion from this particular domain is especially obvious in biobanks, where rhetoric emphasises altruistic contributions. Here, IPRs undoubtedly continue to separate the use of donations by the biobank from the sphere of influence of the “biological citizen”. The emergence of new justifications for this exclusion is especially telling, showing that IP is engaging with new demands by patients. Kerr points out how this division is presented as being in the public interest: “In these discussions, the public’s interests (to better drugs and diagnostic tests) are to be secured through the entitlements of the private sector to own genetic knowledge and the public’s obligation to facilitate this by co-operating with research” (Kerr 2003a, 48). The more frequent reference to research as being in the interest of public health shows that IP is responding to new priorities that otherwise would challenge its legitimacy – but this response also has subversive potential. While IP’s intervention continues to ensure the exclusion of direct interferences by “active” citizens in research agendas and in the economic use of samples, it also opens a debate about IP’s relation to life and health that had previously been deemed “settled” (Rajan 2006, 64) by bioethical arrangements outside of IP. This leads to a contestation of IP’s legitimation within a new frame of reference, which is explored in the next sections and the next chapter. Debates about the role of ‘research patients’ show how IP negotiates the demands of patients as a regime for exclusion, encouraging contributions to research but not granting broader rights of participation implied by notions of ‘citizenship’. This is then contrasted with new approaches to IP in citizen’s science projects, which depend even more on the motivation to contribute to research.