Introduction: New genetic identities?

Recent innovations in biomedical knowledge – notably in the field of genetics and genomics – have created extraordinarily diverse possibilities in the natural and clinical sciences. At the same time, they have opened up an equally varied range of opportunities and challenges for social and cultural analysts. The translation of social relations and categories into biological terms, and the simultaneous expansion of biomedical engagement with more and more aspects of everyday life, furnish social scientists with a diverse array of topics that demand urgent engagement. New biomedical technologies repeatedly create the possibility, not merely

of new knowledge, but also of new forms of knowledge, and new social formations too. The latter form the subject-matter of the companion volume to this one (New Genetics, New Social Formations, Routledge, 2006). They in turn create the possibility of new bases for social identity, individual and collective. The contributions brought together in this volume report empirical research exploring a number of complementary aspects of genetics and the formation of identities. Identifying the relevance of innovation in biomedical science for self-

identity is not in itself a new observation. Recent sociological, anthropological and historical studies of medical or scientific systems, institutions and practices have repeatedly emphasised the intersection of technology, knowledge and identity. The work of Foucault is among the key sources of inspiration here, as is the work of the author who inspired him, Canguilhem. Indeed, Foucault himself mapped out a programme of research on the cultural history of genetic knowledge. In 1969, in his candidacy presentation at the Colle`ge de France (Foucault 1991), he outlined (as he was required to do) a plan for the classes he would deliver. He identified as the central topic ‘the knowledge of heredity’. He delineated a programme of work on nineteenthcentury thought: ‘. . . starting from breeding techniques, on through attempts to improve species, experiments with intensive cultivation, efforts to combat animal and plant epidemics, and culminating in the establishment of a genetics whose birth date can be placed at the beginning of the twentieth century.’ While Foucault’s own programme remained unrealised in that form, some forty years or so later we find an increasing number of

social scientists working on the profound implications of new regimes of genetic knowledge. The emergence of modern medicine, Foucault had previously argued,

was shaped by key changes in technology closely coupled with changes in the institutional context that created a qualitative transformation in medical perception in early nineteenth-century France, a transformation that in turn sets the course for modern biomedical knowledge more generally (Foucault 1972). Canguilhem (1978) also argued that, within the system of knowledge that underpins modern medicine, the ‘normal’ and the ‘pathological’ represent two quite distinct frames of reference. One cannot read the pathological off by just extending the range of physiological values beyond the normal limits. Pathology is not merely a quantitative deviation from the norm, but a qualitatively distinct state. David Armstrong, among others, has extended these ideas, suggesting that in the development of twentieth-century medicine we can identify further organising principles that extend the classical, modern notion of ‘the clinic’ (Armstrong 1983). He identifies, for instance, the mode of knowledge characteristic of ‘the dispensary’ that takes the medical gaze outwards into the community, that identifies rates and values of normal and unhealthy states. This a medicine, not of individual bodies, but of populations and communities, members of which are susceptible to classification and enumeration. Such a mode of medical understanding puts in question Canguilhem’s radical distinction between the normal and the pathological as a universal one, rather than a context-specific characteristic of the classically ‘modern’ clinic. In more recent years, we have had added to the armamentarium of biomedical knowledge various forms of ‘risk’ assessment, in which distinctions between the normal and the pathological are transformed once more. The identification of genetic risks or susceptibilities for inherited medical conditions can have far-reaching implications for personal and collective identity. This intellectual programme has been advanced by a number of authors

who discuss the implications of the new medical technologies and their consequences. Rose (2001), for instance, has provided several key discussions of the new politics of ‘life itself’, developing ideas on ‘biovalue’ from Waldby (2000), among others. This perspective is also developed in the chapter by Venkatesan in this volume (Chapter 11), in which she reviews contemporary perspectives on biomedical innovation from a Foucauldian perspective. The scientific and professional identification of risk can create new

sources of personal identity and self-perception (cf. Novas and Rose 2000). Risk has the potential to transform the relatively stable categories of normality and pathology. The individual biography and the medical history are given a particular salience, in that future physical and mental wellbeing may be perceived as determined, or at least heavily circumscribed, by genetic fate. We now know a very great deal about the personal and interpersonal implications of major genetic conditions, such as Huntington’s

Disease, breast and colorectal cancer, various forms of muscular dystrophy (myotonic, Duchenne, Becker), haemochromatosis and cystic fibrosis. We know that contemporary biomedical research is identifying ever more medical conditions that have at least a genetic component. Physical conditions are now being complemented by psychological conditions in which genetic bases are becoming incriminated: schizophrenia, bipolar disorder, attention deficit disorder and severe depression are all being linked to susceptibility genes. While genetic and environmental interactions are bound to be complex, and further research is certain to result in yet more complexity, the extension of genetic medicine into psychological conditions and behavioural traits will lead to yet further claims for genetic predestination in many domains of everyday life. Genetic susceptibility may not predict actual onset with any certainty, and may not be able to foretell the severity of the condition, but it has the potential to transform our sense of ourselves as embodied social actors, our sense of biographical development, and our sense of personal stability. There is no doubt that recent developments in genetic science have

helped to transform biomedical science and wider medical practice. It would be unwise, however, to attribute all such change exclusively to the scientific revolution occasioned by the human genome project and the exponential growth in post-genomic research. While genomic science has been a significant motor in the development of medical thought, we must not forget that many key idioms of embodiment, health, illness and identity pre-date the genomic revolution itself. Notions of risk clearly pre-date the identification of many illnesses with genetic predispositions – although it is incontrovertible that genetic medicine has given risk a renewed urgency and currency. Likewise, we have not had to wait until the Human Genome Project and its associated activities for the idiom of inheritance to capture inter-generational physical similarities, nor indeed for the observation of familial medical conditions. Genetic medicine sharpens the collective awareness of these phenomena, and has an important impact on medical thought. But it is not a uniquely transformative set of events. It is clear that genetic medicine can contribute to a generic array of risks, susceptibilities and biological bases that impinge on identity, but it is not unique. It is clear that we must avoid genetic exceptionalism. An increasing emphasis on biological predisposition gives rise to issues

of determinism and the theodicy of suffering. A genetic basis for ill-health can imply a deterministic or fatalistic attitude towards suffering. Inherited, genetic conditions appear to be a biological form of destiny, an implacably shaping influence on the unfolding of one’s life. Inherited predispositions for major conditions such as Huntington’s disease can ultimately determine one’s personal fate. Likewise, such fate can be transmitted to one’s children. Familial conditions and risks can be detected through genetic testing, if suspected. Spontaneous mutations can also give rise to genetic conditions – but are not familial, and are unpredictable. They can, nevertheless, be

inexorable in their effects on offspring. The theodicy of genetic illness directs attention towards the search for explanation and meaning. The parents and other family members of affected children can search their own and others’ biographies for explanations. Family trees are inspected by family members as much as they are by genetic specialists. Family members engage in mutual surveillance in the attempt to identify the locus of a genetic trait within a kindred, and its mode of transmission (Featherstone et al. 2006). There is ample scope for the attribution of blame. Likewise, self-blame and feelings of spoiled identity (stigma) can pervade the everyday world of families with genetic conditions. Family members can therefore seek to interpolate personal and biographical reasons for inherited medical conditions. Genetic risk runs counter to most contemporary discourse concerning personal responsibility and health. We are exhorted to reduce our exposure to health risks, such as poor diet, tobacco or alcohol intake. Environmental factors over which individuals exercise little or no control – such as pollution and industrial hazards – are increasingly brought within a discourse of responsibility and accountability. But genetic risk implies no responsibility. One may act prudently as a consequence: there are decisions to be made concerning reproductive behaviour, and one can elect to have regular check-ups for certain conditions. But there is a sense in which genetic risk – whether inherited or spontaneous – is inexorable. It is in that sense that genetic risk and its surveillance runs orthogonally to the sort of environmental and public surveillance that Armstrong (1983) describes under the auspices of ‘the dispensary’. For suffering is again rendered in individualistic terms and in the absence of genetic engineering, the consequences of genetic mutations or deletions are unavoidable. The chapter here by Featherstone et al. (Chapter 7) explores some of these issues in the clinical context of dysmorphology – the genetic specialism concerned with abnormal development. Exploring what they call the ‘moral and sentimental order’ of the genetics clinic, these authors explore how the parents of children with genetically-based problems construct themselves as moral agents, how they construct their own and their children’s identities within the realm of normal family life (cf. Voysey Paun 2006). They also explore how the genetics clinic itself functions as a site of moral and identity work, as counsellors and clients co-construct the moral categories of stigma, blame and normality. The clinic provides an arena for the reconstruction of identity for parents and children. In the course of such clinical encounters, the moral and technical work of clinicians themselves is legitimated. A number of authors have suggested that contemporary genetic tech-

nologies necessarily transform the nature of medical knowledge and lead inexorably to a geneticisation of medicine and the consequent geneticisation of identity (see, e.g., Hedgecoe 2002). From complementary perspectives, recent accounts of the construction of genetic disease include analyses of the ‘expansion’ of diagnostic categories and clinical entities. The identification

of genetic bases for a widening number of conditions can shift the boundaries of diseases and syndromes previously identified primarily on clinical grounds. The analytic value of the notion of ‘geneticisation’ in this context has been contested. It is clear that, on the basis of detailed explorations of the practice of contemporary genetic medicine, there is not a simple, reductionist process whereby genetic conditions become ‘fixed’ as a consequence of diagnostic genetic investigations. It is clear, however, that we must avoid premature closure concerning this point. It is true, as we have already noted, that genetic medicine can give rise to relatively novel phenomena – or can at least give notions like ‘risk’ renewed and special salience. It is not altogether clear, however, that there is a wholesale process of geneticisation at work that gives rise to exceptional and novel forms of identity. The chapter by Bharadwaj et al. (Chapter 8) provides evidence of these processes in the context of genetic haemochromatosis, a potentially serious genetic illness. Bharadwaj and his colleagues show how patients with clinical haemochromatosis seek to develop their own aetiological understandings of the condition, and to extend the clinical definition of their illness to encompass their own lay aetiology. These patients do not, however, present a picture of a ‘geneticised’ personal identity, in that their symptomatology is what is at stake for them personally, rather than the specifically genetic origin of their condition. What does lie behind some of these processes of transformation, in so

far as they are identifiable, is a renewed form of biological reductionism. To stay with the realm of medicine for a moment, we should note two things. First, genetic medicine is just one of several revolutions in modern medicine that have destabilised previous forms of knowledge, and that have appeared destined to re-draw the biological basis for clinical medicine. We have witnessed such phenomena as the bacteriological, the viral and the immunological revolutions. At just the same time as the genetic revolution, other technologies are giving us profound change in our understanding of neurological function. Stem-cell technologies are often added to the genomic revolution to promise barely conceivable changes in physical treatment, repair and enhancement. We must avoid the kind of technological determinism that implies that each new technology brings in its train wholesale changes in medical knowledge or in the creation of social identities. Older forms of understanding are very durable, and can accommodate novelty, rather than being completely overturned by it. None the less, forms of biological reductionism, including genetic

reductionism, are powerful and productive aspects of contemporary biological, medical and social thought at the beginning of the twenty-first century. The convergences between the biosciences and the social sciences in some quarters – as in behavioural genetics, evolutionary psychology and genetic psychiatry – mean that we face new sources of individual and collective identity, in which biological relatedness and shared biological heritage may play a significant role. As Kelly points out in Chapter 4 of

this volume, genetically-based explanations are being extended to an expanded range of behaviours and disorders, while systems biology is simultaneously transforming the nature of those biological explanations. Post-genomic science and tissue engineering also hold out the possibilities –

for good and ill – of human enhancement. Beyond regenerative medicine (such as the replacement of damaged or lost tissues) there is the promise of a ‘post-human’ condition that projects yet further the enhanced or augmented cyborg. O’Neill’s chapter in this volume (Chapter 5) touches on those aspects of genomics. She explores the twin connotations of ‘fashioning flesh’. On the one hand, post-genomic science allows us to fashion tissues, in the sense that they can be created and moulded. On the other hand, such crafted tissues can be incorporated within a ‘fashion system’ whereby the body and its organs are manipulated in accordance with cultural canons of aesthetics and performance. The biological expression of social identity and difference is not a new

phenomenon. The history of biomedical knowledge shows us how the differences of gender have been repeatedly emphasised through the invocation of biomedical categories. At crucial periods of social change, women’s social mobility has been challenged by a series of biological and medical counters. The medical opposition to women’s academic education, based on various physiological arguments, is but one significant example. The racialised constructions of ethnic difference that have informed eugenic and other interventions have long pre-dated contemporary genetics. While modern geneticists have themselves tended to resist any eugenic interpretations of genetic science, the more general cultural contexts of biomedical understanding have foregrounded the biological basis of social differences. These tendencies are reinforced by aspects of evolutionary psychology and behavioural genetics. The populist versions of these contemporary disciplines, however, clearly reinforce the biological-reductionist view of shared behaviours and individual differences. Taken to its logical extreme, behavioural genetics is likely to attribute an enormous array of ordinary social action to biological substrates, and their persistence to adaptive advantage. The categories of cultural variation are thus in danger of intellectual obliteration in favour of biological reductionism. Now, we are not predicting the demise of the social sciences, nor are we assuming that natural science of the highest quality and integrity will endorse crudely reductionist explanations. We know from the fate of past academic fashions that over-enthusiastic adoption of over-simplified systems of thought are rapidly overturned by the recognition of complexity and variation that escapes simplistic models. Nevertheless, we must be alert to the challenges thrown out by the increasing visibility and currency of reductionist thought. One need look no further than the success of various forms of popular

science that embody genetic ideas about common descent, heritage and ethnicity for evidence of this intellectual trend. To take just one example by

way of a starting-point, The Seven Daughters of Eve (Sykes 2001) is one popularising work that has taken the available scientific evidence concerning rates of mutation in mitochondrial DNA (as opposed to DNA in the cell nucleus) to construct a conjectural evolutionary path for the descent of large-scale modern populations. Coupled with the ‘out-of-Africa’ hypothesis of palaeoanthropology, it is plausible to construct lines of descent for contemporary racial populations and trace them back to a very small number of originating ancestors. A rather different, but comparable, example may be suggested by the

popular Blood of the Vikings television series and book (Richards 2001). This attempted to marry up our historical knowledge of the patterns of movement of the Viking Norse people round the British Isles with characteristic genetic traits in the modern population. It proves possible to identify ‘Viking genes’ in those regions that were sites of Viking settlement (such as the Isle of Man), providing evidence of the persistence of distinctive gene pools after many generations. Of course, the identification of ‘Vikings’ among a British population is hardly controversial, and few, if any, are likely to experience any threat to or transformation in their individual or collective identity. There are, however, other contexts in which the identification of racial origins with a given genetic constitution has some considerable consequence. This has been amply demonstrated by the work of Parfitt and his

collaborators (e.g. Parfitt 2002). He has worked with several groups who self-identify as ‘Black Jews’. Their racial identification with Jews is a collective narrative of genetic origins. That narrative has been given added currency, at least in the eyes of the Black Jews themselves, by the identification of genetic markers that they share with Jewish populations elsewhere. For our purposes, it does not matter whether these genetic narratives of shared racial identity are well founded, and whether future investigations will support or modify such claims. What is important is that genetics provides a powerful idiom for the expression of individual and collective identity. The ‘facts’ of biology furnish a warrant for a particular heritage, and a biologised legitimation for an historical claim. Again, it is important that we do not over-state the unique novelty of the genetic idiom. The rhetoric of biological inheritance and relatedness – couched for instance in the idiom of blood – has long provided a vocabulary of nationality, nobility and purity. The intersection of national and biological identity has been documented in many contexts. The economies of biovalue mean that DNA may be regarded as a national resource, as well as a repository of national characteristics. Whether it be through ‘French DNA’ (Rabinow 1999) or the molecular patrimony of small nations and indigenous peoples, the genomic revolution has furnished potent resources for the expression of nationhood and shared origins. In the same vein, the idiom of genomics can provide a potent resource for the expression of social differences.