ABSTRACT
The phrase ‘genetic regulation’ normally refers to the biological process whereby genes are said to regulate the structure and function of proteins, cells and whole organisms, even their behaviour. Gene expression regulates the normal and – where mutating – abnormal or pathological performance of cells: the so-called oncogene, for example, is said to be key to the origin of mutations that cause cancer. But this ‘language of the genes’ is itself an expression of the structure and function of scientific research and an emergent genetic paradigm that has become – though not entirely so (see Stotz et al. 2006) – consolidated through the Human Genome Project. In other words, as Landecker (2005) has shown, there is a recursive relationship between the ways in which biological objects, such as genes, are described and the very experimental infrastructures and languages which produce them. Within this context, regulation is about the management of risk, a move to order the
potentially disordering (Foucault 1977; Douglas 1966). The recursive relation between biological and social framings of genetic regulation means that regulation is expressively hybrid: this is reflected in science studies itself by terms that point quite deliberately to such hybridity, as in Lynch and McNally’s ‘biolegality’ coined in one of the forthcoming chapters. This recursivity can be found to operate within a number of different domains of regulation. These can, for the sake of simplicity (for these cut across each other) be described as the domains of the individual, collective, economic and political ‘bodies’. What is common to these is that genetic regulation rather than being a reductive, simplifying process, involves ever more proliferation of identities, rather than the closing down of them, and so makes for sites of political and regulatory struggle. Each of the chapters ahead focuses on different framings of genetic identity – in the law, forensic databases, and recent developments in biobanking. This argument presumes that there is something quite distinctive about the regulatory
dynamics of genetics that is a reflection of its biological determinacy, the information about a person (and wider family) this renders and the social need to respond to it. There have, however, been many criticisms made of ‘genetic exceptionalism’ (see e.g. Hedgecoe) and McLean’s paper later on discusses some of these in detail. Often such criticisms are of a normative nature and stress the need to refocus attention on much broader questions about access to health resources, the avoidance of all forms of discriminatory
practice and so on. Others point to the ways in which non-genetic disorders (such as HIV) can generate similar problems for the individual suffering from this condition. Recognition of these arguments by the state can, at times, lead to policy which explicitly seeks to pre-empt any form of genetic exceptionalism. Despite this critique of genetic exceptionalism, the specific agency of genetics is
instantiated and expressed through a growing repertoire of clinical, public health, research-based, commercial and state-based practices and organisations. So while genetics may not, in principle, be exceptional it is certainly highly visible, and a site for, and vehicle through which, various forms of regulation are practised and (to a degree) secured. Echoing the observation above, we can consider the regulation of the clinical body
through the rapid growth of diagnostic tests, genetic screening and therapies. Regulation here is evidently hybrid, a move towards identifying and if possible intervening to resolve genetic predisposition towards a specific disease, while at the same time a social intervention that involves the deployment of categories of the normal and abnormal. These socio-technical categories legitimate and enable clinical interventions calculated on the basis of either public health or private markets. These calculations are based on radically different priorities such that the discursive relation between gene, test and outcome, and how this is regulated varies considerably. Moreover, the utility threshold that genetics must reach is higher in public than it is in more market-based systems. Within each of these regimes the practice of regulatory genetics can also vary: in public health genetics services the relationship between tests, risk calculation and local circumstances (such as ethnic profile of the local population, household and family patterns, availability of support services) can vary dramatically within and between countries. The regulation of the ‘collective body’ is less about the testing of individual genetic
profiles and predispositions and more about the creation of population-wide genetic profiles to secure information about the epidemiology of disease or patterns of social behaviour. Tissue repositories, databases and biobanks are designed to create large-scale datasets on both biological and health-related (phenotypic) information derived from donated blood, urine or other tissue samples (Lewis 2004; Webster et al. 2008). Knoppers et al. (2007) and Gibbons and Kaye (2007) have noted how this represents the transition from genetic to genomic research dependent upon bioinformatics and high-throughput sequencing technologies. The next phase of research is likely to involve the study of ‘normal’ genomic variation across whole populations and complex gene-lifestyleenvironment interactions, but undertaken on a global scale through extensive scientific networks. As Gibbons and Kaye comment:
Population genetic databases are intended to be accessed and used over the course of several decades by any number of different researchers, potentially located anywhere around the globe, whether based in the public, charitable or commercial sectors, and who may engage in as yet unknown and entirely unforeseeable kinds of research.
