ABSTRACT
The scientific discoveries associated with the new genetics, combined with its anticipatory and promissory discourses of marshalling in a new era of medicine, have fostered the hope that treatments or cures for many human ailments will be found in the near future. While in the past those who were identified as being at risk or diagnosed with a genetic condition may have considered their biological destiny to be an implacable fate, the promissory discourses and rhetoric of the new genetics can serve to foster the hope that their illnesses or those of their loved ones are open to intervention and remediation through the techniques of molecular biology. The publicity encompassing the Human Genome Project, combined with its promotion of the idea that many illnesses have a genetic component, have made it easier for individuals to identify and understand aspects of themselves through the language of genetics and to identify themselves with others who share a genetic condition. Although in the past biologically-based forms of identification have served as a basis for social and political mobilisation, the forms of biosocial collectivism that have emerged in the United States from the 1980s onwards propose that, by becoming involved in biomedical research, patients and their families can work to challenge the conventional authority structures of medicine, science and the state in order to shape the future of their diseases. As a result of these developments, it could be said that, for those affected by a range of genetic conditions, the hope invested in the promises of the new genetics is not only an act of the imagination, but a field of activity that intensifies the hope that the science of the present will bring about treatments or cures in the near future. This movement contributes to a particular form of the capitalisation of life and its investment with significant social meaning. As a way of trying to encapsulate the social, political and economic materiality of the activities of genetic advocacy groups as they try to accelerate the development of treatment or cures, the term ‘political economies of hope’ will be developed throughout this chapter. The principle argument that will be developed in this chapter is that the
hopes which genetic advocacy groups invest in science have a materiality that can be considered in political-economic terms. The first part of this
argument explores how patients’ associations are becoming involved in the governance of disease. Perhaps one of the most significant political dimensions of advocacy groups’ involvement in research is that they have become significant authorities alongside physicians and scientists who play a role in the promotion of the health of specific populations. Through becoming knowledgeable about their illnesses, by providing medical information to lay persons and clinicians, through organising and coordinating scientific research efforts, and through their political advocacy efforts, the groups which represent persons affected by genetic conditions exert an influence on how diseases are governed. The second part of my argument makes the claim that, as patients’ groups invest in the potential of genomics in order to speed the processes by which cures or therapies are developed, they contribute to a particular form of the capitalisation of life itself by transforming the surfaces and capacities of the body into resources for the production of value. Here I will draw upon the concept of biovalue developed by Catherine Waldby (2000). Waldby uses this concept to discuss how biological samples are productive of value in terms of their potential to augment human health and stimulate circuits for the creation of wealth. The third part of my argument makes the claim that, as genetic advocacy groups become involved in the governance of disease and the generation of biovalue, they contribute to the elaboration of novel norms relating to human participation in scientific research and to the distribution of the benefits derived from it. As a way of highlighting some of the features of this political economy, I will develop a case study of a genetic advocacy group known as PXE International.
