Genetic risk and the birth of the somatic individual

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.

[1]  L. R. Dice Heredity clinics: their value for public service and for research. , 1952, American journal of human genetics.

[2]  E. Goffman Stigma; Notes On The Management Of Spoiled Identity , 1964 .

[3]  C. Davenport Huntington's Chorea in Relation to Heredity and Eugenics. , 1915, Proceedings of the National Academy of Sciences of the United States of America.

[4]  A. Lippman,et al.  Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities , 2020, American Journal of Law & Medicine.

[5]  I. Hacking The looping effects of human kinds , 1995 .

[6]  F. Guattari,et al.  A Thousand Plateaus: Capitalism and Schizophrenia , 1980 .

[7]  C. R. Shaw Expanding Goals of Genetics in Psychiatry , 1963 .

[8]  J. Venter,et al.  Genome: The Autobiography of a Species in 23 Chapters , 2000, Nature Medicine.

[9]  W. Arney,et al.  Medicine and the Management of Living: Taming the Last Great Beast , 1986 .

[10]  J. Ogden,et al.  Psychosocial theory and the creation of the risky self. , 1995, Social science & medicine.

[11]  M. Foucault,et al.  The birth of the clinic : an archaeology of medical perception , 1974 .

[12]  M. Ridley,et al.  Genome: The Autobiography of a Species In 23 Chapters , 1999 .

[13]  F. Kallmann New goals and perspectives in human genetics. , 1961, Acta geneticae medicae et gemellologiae.

[14]  Mariana Valverde,et al.  Maidens at risk: 'date rape drugs' and the formation of hybrid risk knowledges , 2000 .

[15]  E. Abel Mapping Fate: A Memoir of Family, Risk, and Genetic Research (review) , 1996 .

[16]  M. Greco Psychosomatic Subjects and the Duty to Be Well - Personal Agency Within Medical Rationality , 1993 .

[17]  A. Thapar,et al.  Genetic basis of attention deficit and hyperactivity , 1999, British Journal of Psychiatry.

[18]  F. Kallmann Psychiatric aspects of genetic counseling. , 1956, American journal of human genetics.

[19]  M. Poster Michel Foucault: Beyond Structuralism and Hermeneutics , 1984, Telos.

[20]  R. Albin Mapping Fate: A Memoir of Family, Risk, and Genetic Research , 1996 .

[21]  M. Hayden,et al.  Diagnosis of Huntington disease: a model for the stages of psychological response based on experience of a predictive testing program. , 1993, American journal of medical genetics.

[22]  R. Ericson,et al.  The moral hazards of neo-liberalism: lessons from the private insurance industry , 2000 .

[23]  Glyn Elwyn,et al.  Shared decision making and non-directiveness in genetic counselling , 2000, Journal of medical genetics.

[24]  K. Demyttenaere,et al.  Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making. , 1996, Journal of medical genetics.

[25]  T. Marteau Communicating genetic risk information. , 1999, British medical bulletin.

[26]  M. Fraser The nature of Prozac , 2001 .

[27]  S. Franklin Embodied Progress: A Cultural Account of Assisted Conception , 1997 .

[28]  Nikolas Rose,et al.  Inventing Our Selves: Psychology, Power, and Personhood , 1998 .

[29]  J. Beaulieu The space inside the skull : digital representations, brain mapping and cognitive neuroscience in the decade of the brain , 2000 .

[30]  C. Kozma,et al.  Genetic Discrimination: Perspectives of Consumers , 1996, Science.

[31]  S. Foy The patient's view. , 1973, British medical journal.

[32]  A. Lippman Led (astray) by genetic maps: the cartography of the human genome and health care. , 1992, Social science & medicine.

[33]  M R Natowicz,et al.  Discrimination as a consequence of genetic testing. , 1992, American journal of human genetics.

[34]  T. Wilkie Genetics and insurance in Britain: why more than just the Atlantic divides the English-speaking nations , 1998, Nature Genetics.

[35]  Marilyn Strathern,et al.  After Nature: English Kinship in the Late Twentieth Century , 1992 .

[36]  J. Rogoff Dangerous diagnostics: The social power of biological information , 1991 .

[37]  A. Saulitis Chromosomes and criminality. The legal implications of the XYZ syndrome. , 1979, The Journal of legal medicine.

[38]  Genetic information and health insurance. Report of the Task Force on Genetic Information and Insurance. NIH/DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research. , 1993, Human gene therapy.

[39]  J. Krantz,et al.  The birth of the clinic. An archaeology of medical perception , 1975, Medical History.

[40]  Ron Levi,et al.  The mutuality of risk and community: the adjudication of community notification statutes , 2000 .

[41]  Nikolas Rose,et al.  The Politics of Life Itself , 2001, The New Social Theory Reader.

[42]  M. Foucault The Subject and Power , 1982, Critical Inquiry.

[43]  M. Callon,et al.  L’implication des malades dans les activités de recherche soutenues par l’Association française contre les myopathies , 1998 .

[44]  W. Arney,et al.  Power and visibility: the invention of teenage pregnancy. , 1984, Social science & medicine.

[45]  Paul Rabinow,et al.  French DNA: Trouble in Purgatory , 1999 .

[46]  K. Breese,et al.  Fragile X syndrome: What is the impact of diagnosis on families? , 1995 .

[47]  L. Gostin,et al.  Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers , 1991, American Journal of Law & Medicine.

[48]  Dorothy Nelkin,et al.  Dangerous diagnostics : the social power of biological information : with a new preface , 1989 .

[49]  R. Pokorski Insurance underwriting in the genetic era , 1997, American journal of human genetics.

[50]  A. Wexler Mapping fate : a memoir of family, risk, and genetic research , 1995 .

[51]  C. Kang Human Genome Research , 1988 .

[52]  Angel J. Gordo-Lpez,et al.  Inventing our selves: Psychology, power, and personhood , 2000 .

[53]  D. Sparti Making up People , 2001 .

[54]  S. Michie,et al.  Revealed identity: a study of the process of genetic counselling. , 1998, Social Science & Medicine (1967).

[55]  K. Demyttenaere,et al.  Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease , 1999, Journal of medical genetics.

[56]  M. Richards,et al.  Understanding Life's Lottery , 1997, Journal of health psychology.

[57]  R. Kenen Genetic counseling: the development of a new interdisciplinary occupational field. , 1984, Social science & medicine.