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 a...
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| Published in | New Genetics, New Identities pp. 13 - 22 |
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| Format | Book Chapter |
| Language | English |
| Published |
Routledge
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| Subjects | |
| Online Access | Get full text |
| DOI | 10.4324/9780203962923-8 |
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| Summary: | 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 merelyof 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 ofsocial 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 authorswho 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 newsources 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’sDisease, 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 havehelped 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 issuesof 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, beinexorable 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 respon |
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| DOI: | 10.4324/9780203962923-8 |