ABSTRACT
The last few decades have shown a growth in collections of human biological material. These large collections of samples, stored in biobanks, play an important role in biomedical research (Lewis 2004; Holm and Bennett 2001). Research from biobanks is thought to lead to new treatments for disease. Recently a new sort of biobank has been set up: the UK Stem Cell Bank, the first of its kind in the world. Stem cells, especially those derived from embryos, are able to differentiate into a wide range of somatic cell types. It is because of their pluripotent character that stem cells are expected to influence modern medicine profoundly by introducing cell replacement therapies and immunological compatible replacement tissues. Various diseases could benefit from cell-based therapies; Parkinson’s disease, diabetes, heart failure and spinal cord lesions, amongst others (Wert and Mummery 2003). The UK Stem Cell Bank (SCB) was set up to ensure the quality of human stem cell lines used in research and therapy. However, at this stage it is still uncertain how stem cells could be successfully applied in tissue engineering and cell therapies. There are still several techno-scientific and social issues to be resolved. Therefore the governance of the SCB is a manifold challenge. One of the challenges for the management of the bank was how to
involve the public. Widespread public concern about biomedical developments was raised after the cloning of Dolly the sheep in 1998. This initiated a public consultation on cloning (Wellcome Trust 1998) in which participants expressed concerns relating to biomedical subjects such as the use of embryos for scientific experimentation. Public anxieties around cloning developments were translated into an emerging anti-science climate in the UK (Parry 2003: 148). The public consultation on cloning indicated that stem cell technology was being introduced at a time when sciencesociety relations were under strain. In response to this evolving climate there has been a call for increased public participation in the governance of science and technology. The notion of governance refers to the idea that governing is a multi-actor process instead of a top-down activity. However,
the precise role of the public in the new governance of science and technology is still the subject of much discussion (Kirejczyk 2003). In examining the role of the public in the organisation of the UK Stem
Cell Bank, this chapter contributes to the growing interest in the governance of life-sciences and public involvement (Jasanoff 2004; Jones and Salter 2003; Frewer and Salter 2003; Fuller 2000). In this analysis I will draw upon insights developed within the field of science and technology studies (Latour 1987; Callon et al. 1986). According to Latour science is politics by other means: doing science is doing politics. Within science and technology studies actor-network theory has been successfully used to analyse the development of scientific practices. According to this theory new scientific practices develop by translating current connections between objects and humans. When new technologies are introduced, links are redefined, and this is called ‘translation’. This can be briefly illustrated by Callon’s study on the scallops of St Brieuc Bay (Callon 1986). In the 1970s the production of scallops in St Brieuc Bay declined because of several factors (marine predators, hard winters, over-consumption). Three marine biologists developed a conservation strategy for the scallop population. Callon’s analysis identified four moments of translation in the attempts of the researchers to impose their definition of the situation on others. First (problematisation): the researchers sought to become necessary to other actors in the scene by defining the nature of the problems facing them and then suggesting that these problems would be resolved if the actors negotiated the ‘obligatory passage point’ of the researchers’ programme of investigation. Second (interessement): a series of processes by which the researchers sought to lock the other actors into the roles that had been proposed for them within that programme. Third (enrolment): a set of strategies in which the researchers sought to define and interrelate the various roles they had allocated to others. Fourth (mobilisation): a set of methods used by the researchers to ensure that supposed spokesmen for various relevant collectivities were properly able to represent those collectivities. The goal of stem cell therapy is to repair a damaged tissue that cannot
heal itself in order to cure diseases like Alzheimer’s and Parkinson’s disease. Scientists believe that stem cell therapies could become a clinical reality within five to ten years from the time of writing this chapter, but a huge research effort, and a great deal of what Latour would call ‘politics and negotiation’, is still needed to achieve this goal. The concept of translation can be applied in the analysis of the development of stem cell research and stem cell therapy, particularly regarding the enrolment of important actors. For example: a biologist concludes in a scientific article, based on a list of several tests, that embryonic stem cells are more flexible than adult stem cells. This conclusion may be used in a government report to argue in favour of embryonic stem cell research. In turn this would imply a need for more embryos, and therefore donors of spare embryos would have to be sought. This process is called a ‘translation’, as there has
been a shift from a scientific article to an advisory report to a call for donors. A condition for successful translations is an infrastructure of humans, institutes and materials (cell cultures, computers, reports, tests, labs), in short a heterogeneous network. The United Kingdom aims to be the world leader in stem cell research and therapy, and the British initiative to set up the first European stem cell bank is an important link in the regulatory infrastructure to make stem cell therapy possible in the future. The main focus in this chapter is on the efforts to enrol important actors in this network, specifically the public. Key figures involved with the setting up and running of the SCB were
interviewed, and this information was supported by an analysis of the SCB’s policy documents. The central conclusion of this study is that the public has to be enrolled in the network of the bank, just like other actors such as the stem cell community and regulatory authorities. These alliances are essential for the success of the SCB. The SCB should embody trust and safety in at least two ways. First, it should ensure the development of safe stem cell products by re-culturing and testing stem cells for use in research and therapy. Second, the success of stem cell therapy not only relies on the production of safe stem cell lines, but depends on public support for, and trust in, stem cell therapy, and in the ethically sound production of stem cell lines. These issues receive as much attention as techno-scientific issues. I argue that the public is enrolled in two different ways: the general public as a rhetorical actor, and a specific public as a consulted actor. I will argue in favour of more small-scale interactions with a specific public as a new form of governance.
