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Novas and Rose - Genetic Risk and Somatic Individual 2000

Novas and Rose - Genetic Risk and Somatic Individual 2000

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Published by: ManoloBonifacio on Sep 07, 2012
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Genetic risk and the birth of the somatic individual
Carlos Novas and Nikolas Rose
This paper considers the implications ofthe rise ofthe new molecular genetics for theways in which we are governed and the ways in which we govern ourselves. Usingexamples ofgenetic screening and genetic discrimination in education, employmentand insurance, and a case study ofdebates among those at risk ofdeveloping Hunt-ington’s Disease and their relatives, we suggest that some ofthe claims made by criticsofthese new developments are misplaced. While there are possibilities ofgenetic dis-crimination, the key event is the creation ofthe person ‘genetically at risk’. But geneticrisk does not imply resignation in the face ofan implacable biological destiny: itinduces new and active relations to oneselfand one’s future. In particular, it gener-ates new forms of‘genetic responsibility’, locating actually and potentially affectedindividuals within new communities ofobligation and identication. Far from gener-ating fatalism, the rewriting ofpersonhood at a genetic level and its visualizationthrough a ‘molecular optic’ transforms the relations between patient and expert inunexpected ways, and is linked to the development ofnovel ‘life strategies’, involvingpractices ofchoice, enterprise, self-actualization and prudence in relation to one’sgenetic make-up. Most generally, we suggest, the birth ofthe person ‘genetically atrisk’ is part ofa wider reshaping ofpersonhood along somatic lines and a mutation inconceptions oflife itself.Keywords: genetics; risk; identity; Huntington’s Disease; biopolitics; genetic coun-selling.
Among the many consequences ofrecent advances in the life sciences – in humangenetics, molecular biology, genetic medicine and biotechnology – has been amutation in ‘personhood’. This is not merely a modication oflay, professionaland scientic ideas about human identity and subjectivity, but a shift in the
Copyright © 2000 Taylor & Francis LtdISSN 0308-5147 print/ISSN 1469-5766 online
Economy and Society Volume 29 Number 4 November 2000: 485–513Department ofSociology, Goldsmiths College, University ofLondon, New Cross, LondonSE14 6NW. E-mail: Novas: sop01cn@gold.ac.uk; Rose: n.rose@gold.ac.uk
presuppositions about human beings that are embedded in and underpin par-ticular practices. In this paper we focus upon one ofthese: the human being whois ‘genetically at risk’. This kind ofperson is born at the intersection ofat leastthree trajectories.
, we see the growing beliefthat many undesirable con-ditions – physical illnesses or behavioural pathologies – have a genetic basis. Thismay be in the form ofa ‘genetic mutation’ for a particular pathology such asPhenylketonuria or Huntington’s Disease, or it may be in a certain genetic make-up, which may involve many genes and their interactions with one another,which increases the likelihood that certain individuals will develop a particularcondition such as breast cancer.
, researchers claim that they have thecapacity to characterize the genetic sequences or markers associated with theoccurrence ofmany conditions at the molecular level and that this capacity willincrease. This arises, in particular, out ofthe use oflarge-scale databases thatintegrate DNA analysis oftissue samples with family histories and personalmedical records.
, doctors claim that they are increasingly able to identifyspecic individuals with the genetic make-up linked to the development ofpar-ticular conditions prior to their onset through diagnostic tests. This identi-cation may be precise, where genetic screening is able to identify the genes orpolymorphisms themselves. It may be probabilistic, where screening is based onthe identication ofgenetic markers associated with increased probabilities of being affected, or where identication is through family histories or the identi-cation offactors associated with the condition. These developments, and associ-ated mutations in personhood, re-shape the ways in which we are governed, andthe ways in which we govern ourselves.Re-cataloguing illness and pathologies along a genetic axis does not generatefatalism. On the contrary, it creates an obligation to act in the present in relationto the potential futures that now come into view. The discourses and practicesofgenetics here link up with those ofrisk. While hereditary knowledges havelong been associated with various forms ofrisk thinking, the availability ofpre-dictive and predisposition genetic testing introduces a qualitative new dimen-sion into genetic risk, creating new categories ofindividuals and accordinggenetic risk a new calculability. As a result ofthese new knowledges, individualsmay be specically identied as genetically at risk for a particular condition, andmay then be treated, by themselves, and by others ranging from employers andinsurance companies to future spouses and genetic counsellors, as iftheir natureand destiny was indelibly ‘marked’ by this genetic aw. In some cases they maybe treated as ifthey were virtually certain to develop a condition in its mostsevere form, despite the fact that the ‘penetrance’ ofthe genes may be unknown,that in most cases only a certain percentage ofindividuals in this class will sufferin this way, and that the timing ofonset and severity ofany disorder is unpre-dictable. Not only may such persons suffer various forms ofsocial stigma andexclusion from certain opportunities, services or benets, but they may also ndthemselves, voluntarily or involuntarily, under the aegis ofthe medical, psychi-atric or legal professions, and the subject ofvarious forms ofsurveillance ortreatment in the name ofprevention.
Economy and Society
But the new genetics also links up with contemporary practices ofidentity. Itoperates in a political and ethical eld in which individuals are increasinglyobligated to formulate life strategies, to seek to maximize their life chances, totake actions or refrain from actions in order to increase the quality oftheir lives,and to act prudently in relation to themselves and to others. As life has becomea strategic enterprise, ‘the categories ofhealth and illness have become vehiclesfor the self-production and exercise ofsubjectivities endowed with the facultiesofchoice and will’ (Greco 1993: 358). In this context, genetic forms ofthoughtnot only give life strategies a genetic coloration but also create new ethicalresponsibilities. When an illness or a pathology is thought ofas genetic, it is nolonger an individual matter. It has become familial, a matter both offamily his-tories and potential family futures. In this way genetic thought induces ‘geneticresponsibility’ – it reshapes prudence and obligation, in relation to gettingmarried, having children, pursuing a career and organizing one’s nancialaffairs. Hence, like Ian Hacking’s interactive kinds (Hacking 1986, 1995), thesedescriptions do not merely inform the judgements, calculations and actions of agencies ofcontrol – they shape the self-descriptions and possible forms of action ofthe genetically risky individual.The rise ofthe person genetically at risk is one aspect ofa wider change inthe vision oflife itself– a new ‘molecular optics’. Life is now imagined, investi-gated, explained, and intervened upon at a molecular level – in terms ofthe mol-ecular structure ofbodily components, the molecular processes oflife functions,and the molecular properties ofpharmaceutical products. Ofcourse, geneticistsstill gather information on family histories. But increasingly this gross level of data is only a stepping-stone in the attempt to construct linkage maps which canthen be the basis ofDNA sequencing and gene-hunting which will identify theexact chromosomal location and sequence ofthe mutated gene in question.
Wecan see this molecular optic at work when heredity is visualized in terms ofthesequences ofbases on the human genome and when illnesses or susceptibilitiesare identied in terms ofmutations at particular locations on a specic chromo-some. For example, one condition involving fronto-temporal Dementia andParkinsonism is known as FTDP-17 because it is linked to a number ofmuta-tions in a specic region ofchromosome 17. Increased susceptibility to breastcancer has been linked to the mutations known as BRCA1 and BRCA2 onchromosome 13. Researchers have tried to link variations in personality such asnovelty seeking, or psychiatric disorders such as manic depression, with the syn-thesis or non-synthesis ofparticular proteins or the characteristics ofparticularneuronal transmitters or neural receptor sites – chromosome 11 being a par-ticular favourite.
As the body becomes the subject ofa molecular gaze, life isrecast as a series ofprocesses that can be accounted for and potentially re-engineered at the molecular level.Most generally we will suggest that the birth ofthe individual ‘genetically atrisk’ has to be understood as one dimension ofa wider mutation in personhoodthat we term ‘somatic individuality’ – in which new and direct relations areestablished between body and self. New biomedical languages ofdescription and
Carlos Novas and Nikolas Rose: Genetic risk

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