IP can’t be fixed because it isn’t broken—it’s designed as method of exclusion from lawmaking—any reform the aff attempts will only increase the responsibilities of citizens without increasing their participatory rights

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 147-148. LJS

This strong desire to contribute to research, and the fact that in this particular case it was strong enough to raise over three times the originally required amount of money, shows how much the responsibility to optimise health has become a powerful motivator for voluntary contributions to genetic research.76 In the example of the microbiome project, individual contributions go far beyond the involvement needed for traditional biobanks. But in contrast to these well-developed responsibilities, definitive rights of participation connected to the notion of citizenship are not as pronounced – even in the microbiome project, which is far more open than other projects. The rhetoric of citizens’ science presents knowledge and research as a form of general empowerment, which enables individuals to understand the ‘truth’ about their bodies. Its relation to IP is still largely untested, as projects are still relatively new. While these participatory structures can challenge IP’s exclusionary function, the empowered citizens in these projects fail to challenge the new responsibilities of the subject. Instead, as the identity of the genetic citizen is based on knowledge of their genetic condition, this ‘empowerment’ of the subject automatically reinforces the validity of genetic truth discourses, and the responsibilities arising from them. Healthcare practitioners and national health services also tap into this notion of empowerment without actual rights by promoting personalised medicine (for instance based on pharmacogenetics77). This vision of personalised medicine hopes for example that “in the future, we will all carry SMART cards, which will contain our genetic information. Using these SMART cards, a GP will able to prescribe the right drug at the right dose at the right time” (Institute of Translational Medicine 2015b). This is also part of the UK’s new life sciences strategy, harnessing “three quite fundamental shifts in the practice of modern medicine: a coming revolution in biomedicine, in data for quality and proactive care, [and] in the role that patients play in controlling their own health and care” (D. Campbell 2014). Importantly, a national programme of “personalised medicine” would formally impose new obligations on the individual patient to know and to disclose their own genome. This form of inclusion, however, would still fall short of the participatory rights implied by the notion of citizenship – especially when faced with exclusion from control over information by means of blanket transfer of IP. IP’s affinity with this notion of limited empowerment thus ‘manages’ biopolitical challenges by active genetic patients, deflecting demands for participation in the further usage of information. Citizens’ science challenges the exclusion of patients from control over expert knowledge by IPRs to some extent, yet simultaneously reinforces somatic responsibilities of the self-actualising subject. The emergence of notions of the ‘research patient’ stressing subject’s empowerment through contributions to research can be read as evidence of processes of accommodation folding the active patient’s demands into the existing system without disruption. By excluding participation by anyone but the IP holder, the IP system plays a central role in ensuring control over the bioeconomy’s further use of information derived from donations and national medical health records. This exclusionary function of IPRs has thus far managed challenges from a “biopolitics from below” (Raman and Tutton 2010, 722, see above), which however in the long run could fundamentally question the economic utility of IPRs as a whole. The analysis highlighted how new forms of IP strategies put pressure on the economic and biopolitical legitimacy of this exclusionary regime. Alternative IP strategies are also emerging in the sector of global health, reflecting a growing influence of patients’ concerns. The last section points out how juridical subjects such as medical research charities and public-private-partnerships (PPPs) are challenging IP in a “biopolitics from above”, strategically employing IP with the aim of improving the life and health of populations.