Abstract
Some have argued that advances in molecular genetics will lead to the geneticisation of identity and the subsequent reduction of the human subject to their genetic complement. In this article, we advance the more cautious argument that far from reducing subjectivity to genetics, genetic knowledge is incorporated and resisted in complex ways. We draw our analysis from a sample of individuals who have attended a clinical genetic service in South Wales. In-depth qualitative interviews (n=61) were conducted with family members to explore the ways in which genetic risk foregrounds patterns of relatedness and responsibility. A surprisingly high incidence of non-disclosure of risk was reported in our study. Families provided complex explanations of guilt, blame, character and surveillance to justify deferring or delaying disclosure of risk. We explain these findings in terms of conditions immanent to the materiality of everyday experience. Our account of ‘practical ethics’ combines discursive and pre-discursive explanations to explore the role of inheritance, kinship and affect in the modulation of genetic responsibility.
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References
Antaki, C. (1988) Analyzing Everyday Explanation: A Case Book of Methods. London: SAGE.
Armstrong, D., Michie, S. and Marteau, T. (1998) Revealed identity: A study of the process of genetic counselling. Social Science and Medicine 47: 1653–1658.
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008a) Managing self responsibility through other-oriented blame: Family accounts of genetic testing. Social Science and Medicine 66: 1521–1532.
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008b) Micropolitics of responsibility vis-à-vis autonomy: Parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health and Illness 30 (2): 255–271.
Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2009) Professional ambivalence: Accounts of ethical practice in childhood genetic testing.
Bosk, C. (1992) All God's Mistakes: Genetic Counseling in a Paediatric Clinic. Chicago, IL: The University of Chicago Press.
Burr, V. (1995) An Introduction to Social Constructionism. London: Routledge.
Burrows, R., Nettleton, S. and Bunton, R. (1995) Sociology and health promotion. Health, risk and consumption under late modernism. The Sociology of Health Promotion. Critical Analyses of Consumption, Lifestyle and Risk. London: Routledge.
Coster, W. (1993) Kinship & Inheritance in Early Modern England: Three Yorkshire Parishes. New York: Borthwick Institute Publications.
Crawford, R. (1980) Healthism and the medicalization of everyday life. International Journal of Health Services 10: 365–388.
Clarke, A. (2007) Genetic counselling. In: E. Ashcroft, A. Dawson, H. Draper and J. R. McMillan (eds.) Principles of Health Care Ethics, 2nd edn. Chichester: John Wiley.
Deleuze, G. (1988) Spinoza: Practical Philosophy. San Francisco, CA: City Lights Books.
Dreyfuss, R.C. and Helkin, D. (1992) The jurisprudence of genetics. Vanderbilt Review 45 (2): 313–348.
Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A. (2006) Risky Relations: Family, Kinship and the New Genetics. Oxford: Berg Publishers.
Featherstone, K., Latimer, J., Atkinson, P., Pilz, D. and Clarke, A. (2005) Dysmorphology and the spectacle of the clinic. Sociology of Health and Illness 27 (5): 551–574.
Finch, J. and Mason, J. (2000) Passing On: Kinship and Inheritance in England. London: Routledge.
Finkler, K. (2001) Experiencing the New Genetics: Family and Kinship on the Medical Frontier. Philadelphia, PA: University of Pennsylvannia Press.
Firth, R. (2004) Studies of Kinship in London. London: Berg Publishers.
Foucault, M. (1997) The birth of biopolitics. In: P. Rabinow (ed.) Ethics: Subjectivity and Truth, Vol. 1. New York: The New Press.
Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V. and Watson, M. (2003) Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. Journal of Medical Ethics 29: 74–83.
Holy, L. (1997) Anthropological Perspectives on Kinship. Ann-Arbor, MI: University of Michigan Press.
Hook, D. (2001) Discourse, knowledge, materiality, history. Theory and Psychology 11 (4): 521–547.
Kenen, R.H. (1984) Genetic counselling: The development of a new interdisciplinary occupational field. Social Science and Medicine 18 (7): 541–549.
Kenen, R.H. (1994) The human genome project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized? In: I. Robinson (ed.) Life and Death under High Technology Medicine. Manchester: Manchester University Press.
Lippman, A. (1991) Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law and Medicine 17 (1–2): 15–50.
Lippman, A. (1992) Led (astray) by genetic maps: The cartography of the human genome and health care. Social Science and Medicine 35 (12): 1469–1476.
Lupton, D. (1995) The Imperative of Health: Public Health and the Regulated Body. London: Sage.
MacEowen, F.H. (2004) Spiral of Memory and Belonging: A Celtic Path of Soul and Kinship. Berkeley, CA: Publishers Group West.
Manjoney, B.M. and McKegney, F.P. (1978) Individual and family coping with polycystic kidney disease: The harvest of denial. International Journal of Psychiatry in Medicine 9 (1): 19–31.
Marteau, T.M. (1999) Communicating genetic risk information. British Medical Bulletin 55 (2): 414–428.
Massumi, B. (2002) Parables for the Virtual: Movement, Affect, Sensation. Durham & London: Duke University Press.
Novas, C. and Rose, N. (2000) Genetic risk and the birth of the somatic individual. Economy and Society 29 (4): 485–513.
Parker, I. (1992) Discourse Dynamics: Critical Analysis for Social and Individual Psychology. London: Routledge.
Petersen, A. and Bunton, R. (2002) The New Genetics and the Public's Health. London: Routledge.
Petersen, A. and Lupton, D. (1996) The New Public Health: Health and Self in the Age of Risk. London: SAGE.
Pilnick, A. (2002) What ‘most people’ do. Exploring the ethical implications of genetic counseling. New Genetics & Society 21: 339–350.
Rabinow, P. (1996) Essays on the Anthropology of Reason. Princeton: Princeton University.
Rapp, R. (1988) Chromosomes and communication: The discourse of genetic counseling. Medical Anthropology Quarterly 2: 144–157.
Richards, M.P. (1993) The new genetics: Some issues for social scientists. Sociology of Health and Illness 15 (5): 567–586.
Richards, M.P. (1999) Genetic counselling for those with a family history of breast or ovarian cancer: Current practice and ethical issues. Acta Oncologica 38: 559–565.
Rimoin, D.L., Connor, J.M., Pyeritz, R.E. and Korf, B.R. (eds.) (2002) Emery and Rimoin's principles and practice of medical genetics. 4th edn. London: Churchill Livingstone.
Sarangi, S. and Clarke, A. (2002a) Zones of expertise and the management of uncertainty in genetics risk communication. Research on Language and Social Interaction 35: 139–171.
Sarangi, S. and Clarke, A. (2002b) Constructing an account by contrast in counseling for childhood genetic testing. Social Science and Medicine 54: 295–308.
Sarangi, S., Clarke, A., Bennert, K. and Howell, L. (2003) Categorisation practices across professional boundaries: Some analytic insights from genetic counseling. In: S. Sarangi and T. van Leeuwen (eds.) Applied Linguistics and Communities of Practice. London: Continuum.
Stone, E. (1989) Black Sheep and Kissing Cousins: How Our Family Stories Shape Us. New Jersey: New Brunswick Transaction Publishers.
Taussig, K., Rayna, R. and Heath, D. (2003) Flexible eugenics: Technologies of the self in the age of genetics. In: A. H. Goodman, D. Heath and S. M. Lindee (eds.) Genetic Nature/Culture: Anthropology and Science Beyond the Two-Culture Divide. Berkeley, CA: University of California Press.
Watson, E.K., Mayall, E.S., Lamb, J., Chapple, J. and Williamson, R. (1992) Psychological and social consequences of community carrier screening programme for cystic fibrosis. Lancet 340: 217–220.
Weijer, C. (2000) The ethical analysis of risk. Journal of Law, Medicine and Ethics 25 (3): 372–392.
Acknowledgements
We thank all the participants in the study and colleagues at Cesagen and the Institute of Medical Genetics, Cardiff, who supported the research. The support of the Wellcome Trust and the Economic and Social Research Council (ESRC) is gratefully acknowledged. The work was part of Cesagen, the ESRC Research Centre for Economic and Social Aspects of Genomics.
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Arribas-Ayllon, M., Featherstone, K. & Atkinson, P. The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect. Soc Theory Health 9, 3–23 (2011). https://doi.org/10.1057/sth.2009.22
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DOI: https://doi.org/10.1057/sth.2009.22