Genetic risk and the birth of the somatic individual

Abstract

This paper considers the implications of the rise of the new molecular genetics for the ways in which we are governed and the ways in which we govern ourselves. Using examples of genetic screening and genetic discrimination in education, employment and insurance, and a case study of debates among those at risk of developing Huntington's Disease and their relatives, we suggest that some of the claims made by critics of these new developments are misplaced. While there are possibilities of genetic discrimination, the key event is the creation of the person 'genetically at risk'. But genetic risk does not imply resignation in the face of an implacable biological destiny: it induces new and active relations to oneself and one's future. In particular, it generates new forms of 'genetic responsibility', locating actually and potentially affected individuals within new communities of obligation and identification. Far from generating fatalism, the rewriting of personhood at a genetic level and its visualization through a 'molecular optic' transforms the relations between patient and expert in unexpected ways, and is linked to the development of novel 'life strategies', involving practices of choice, enterprise, self-actualization and prudence in relation to one's genetic make-up. Most generally, we suggest, the birth of the person 'genetically at risk' is part of a wider reshaping of personhood along somatic lines and a mutation in conceptions of life itself.

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