Healthy citizenship beyond autonomy and discipline: Tactical engagements with genetic testing

BioSocieties

Volumn 10, Issue 3, 2015, Pages 295-316

  Sharon, Tamar ^a  

^a MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

autonomous choice; discipline; everyday life; genetic testing; governmentality; healthy citizenship

Indexed keywords

EID: 84939811009     PISSN: 17458552     EISSN: 17458560     Source Type: Journal    
DOI: 10.1057/biosoc.2014.29     Document Type: Article

References (108)

1. Ahearne, J. (1995) Michel de Certeau: Interpretation and Its Other. Stanford, CA: Stanford University Press.
2. Armstrong, D. (1995) The rise of surveillance medicine. Sociology of Health and Illness 17(3): 393-404.
3. Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008) The micropolitics of responsibility vis-à-vis autonomy: Parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health & Illness 30(2): 255-271.
4. Arribas-Ayllon, M., Featherstone, K. and Atkinson, P. (2011) The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect. Social Theory & Health 9(1): 3-23.
5. Arris, M. (1997) Against Death: The Practice of Living with AIDS. Amsterdam: Gordon and Breach Publishers.
6. Ayme, S., Macquart-Moulin, G., Julian-Reynier, C., Chabal, F. and Giraud, F. (1993) Diffusion of information about genetic risk within families. Neuromuscular Disorder 3(5/6): 571-574.
7. Bates, B., Templeton, A., Achter, P., Harris, T. and Condit, C. (2003) What does 'A gene for heart disease' mean American Journal of Medical Genetics Part A 119 A(2): 156-161.
8. Barry, A., Osborne, T. and Rose, N. (eds.) ,(1996) Foucault and Political Reason: Liberalism, Neoliberalism and Rationalities of Government. London: UCL Press.
9. Beck, U. and Beck-Gernsheim, E. (2001) Individualization: Institutionalized Individualism and its Social and Political Consequences. London: SAGE
10. Beeson, D. and Doksum, T. (2001) Family values and resistance to genetic testing. In: B. Hoffmaster (ed.) Bioethics in Social Context. Philadelphia, PA: Temple University Press, pp. 153-179.
11. Braun, B. (2007) Biopolitics and the molecularization of life. Cultural Geographies 14(1): 6-28.
12. Buchanan, I. (1992) Writing the wrongs of history: de Certeau and post-colonialism. Journal of the South Pacific Association for Commonwealth Literature and Language Studies 33: 39-48.
13. Buchanan, I. (2000) Michel de Certeau: Cultural Theorist. London: Sage. Bunton, R., Nettleton, S. and Burrows, R. (eds.) (1995) The Sociology of Health Promotion: Critical Analyses of Consumption, Lifestyle and Risk. London: Routledge
14. Burchell, G., Gordon, C. and Miller, P. (eds.) (1991) The Foucault Effect: Studies in Governmentality. Chicago, IL: Chicago Universiy Press.
15. Callon, M. and Rabeharisoa, V. (2004) Gino's lesson on humanity: Genetics, mutual entanglements and the sociologist's role. Economy and Society 33(1): 1-27.
16. Callon, M. and Rabeharisoa, V. (2008) The growing engagement of emergent concerned groups in political and economic life: Lessons from the French Association of Neuromuscular Disease Patients. Science, Technology and Human Values 33(2): 230-261.
17. Chilibeck, G., Lock, M. and Sehdev, M. (2011) Postgenomics, uncertain futures, and the familiarization of susceptibility genes. Social Science and Medicine 72(11): 1768-1775.
18. Clarke, A et al (2005) Genetic professionals' reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics 13: 556-562.
19. Condit, C.M. (1999) How the public understands genetics: Non-deterministic and non-discriminatory interpretations of the 'blueprint' metaphor. Public Understanding of Science 8(3): 169-180.
20. Condit, C.M. (2011) When do people deploy genetic determinism A review pointing to the need for multi-factorial theories of public utilization of scientific discourses. Sociology Compass 5(7): 618-635.
21. Condit, C.M. et al (2002) Recipes of blueprints for our genes How contexts selectively activate the multiple meanings of metaphors. Quarterly Journal of Speech 88(3): 303-325.
22. Condit, C.M., Gronnvoll, M., Landau, J., Shen, L., Wright, L. and Harris, T.M. (2009) Believing in both genetic determinism and behavioral action: A materialist framework and implications. Public Understanding of Science 18(6): 730-746.
23. Conrad, P. (1992) Medicalization and social control. Annual Review of Sociology 18: 209-232.
24. Coveney, J. (1998) The government and ethics of health promotion: The importance of Michel Foucault. Health Education Research 13(3): 459-68.
25. Cox, S.M. and McKellin, W. (1999) 'There's this thing in our family': Predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness 21(5): 622-646.
26. Crawford, R. (1980) Healthism and the medicalization of everyday life. International Journal of Health Services 10(3): 365-388.
27. D'Agincourt-Canning, L. (2001) Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics 15(3): 231-247.
28. de Certeau, M. (1984) The Practice of Everyday Life. Translated by S. Rendall. Berkeley, CA: University of California Press.
29. Emslie, C., Hunt, K. and Watt, G. (2003) A chip off the old block Lay understandings of inheritance among men and women in mid-life. Public Understanding of Science 12(1): 47-65.
30. Fanos, J.H. and Johnson, J.P. (1995) Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. American Journal of Medical Genetics 59(1): 85-91.
31. Featherston, K., Atkinson, P., Bharadwaj, A. and Clarke, A. (eds.), 2006 ,Risky Relations: Family, Kinship and the New Genetics. New York: Berg Publishers.
32. Flower, M.J. and Heath, D. (1993) Micro-anatomo politics: Mapping the human genome project. Culture, Medicine and Psychiatry 17(1): 27-41.
33. Forrest, K., Simpson, S.A., Wilson, B.J., van Teijlingen, E.R., McKee, L., Haites, N. and Matthews, E. (2003) To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics 64(4): 317-326.
34. Foucault, M. (1977) Discipline and Punish: The Birth of the Prison. Translated by A. Sheridan. London: Allen Lane
35. Foucault, M. (1979) The History of Sexuality, Volume 1: An Introduction. Translated by R. Hurley. London: Allen Lane
36. Foucault, M. (2008) The Birth of Biopolitics. Translated by G. Burchell. New York: Palgrave Macmillan.
37. Franklin, M. (2004) Postcolonial Politics, the Internet and Everyday Life: Pacific Traversals Online. London: Routledge.
38. Fraser, N. (1989) Foucault on modern power: Empirical insights and normative confusions. In: Unruly Practices: Power, Discourse and Gender in Contemporary Social Theory. Minneapolis, MN: University of Minnesota Press, pp. 17-34.
39. Frow, J. (1991) Michel de Certeau and the problem of representation. Cultural Studies 5(1): 52-60.
40. Gammeltoft, T. and Wahlberg, A. (2014) Selective reproductive technologies. Annual Review of Anthropology 43, doi: 10.1146/annurev-anthro-102313-030424.
41. Gibbon, S. and Novas, C. (eds.) 2008) Biosocialities, Genetics and the Social Sciences: Making Biologies and Identities. London:Routledge.
42. Gould, C. (2004) Globalising Democracy and Human Rights. Cambridge: Cambridge University Press.
43. Green, J., Richards, M., Murton, F., Statham, H. and Hallowell, N. (1997) Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. Journal of Genetic Counseling 6(1): 45-60.
44. Habermas, J. (1990) Some questions concerning the theory of power: Foucault again. In: The Philosophical Discourse of Modernity: Twelve Lectures. Translated by F.G. Lawrence. Boston, MA: MIT Press, pp. 266-293.
45. Hall, W.D., Mathews, R. and Morley, K.I. (2010) Being more realistic about the public health impact of genomic medicine. PLoS Med 7(10): e1000347.
46. Hallowell, N. (1999) Doing the right thing: Genetic risk and responsibility. Sociology of Health and Illness 21(5): 597-621
47. Harris, R., Wathen, N. and Wyatt, S. (eds.) (2010) Working to be healthy: Empowering consumers or citizens In: Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. New York: Palgrave Macmillan, pp. 211-224.
48. Harvey, A. (2010) Genetic risks and healthy choices: Creating citizen-consumers of genetic services through empowerment and facilitation. Sociology of Health & Illness 32(3): 365-381.
49. Heshka, J.T., Palleschi, C., Howley, H., Wilson, B. and Wells, P.S. (2008) A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genetics in Medicine 10(1): 19-32.
50. Highmore, B. (2006) Michel de Certeau: Analysing Culture. London: Continuum
51. Huniche, L. (2011) Moral landscapes and everyday life in families with Huntington's disease: Aligning ethnographic description and bioethics. Social Science & Medicine 72(11): 1810-1816.
52. Kelly, S. (2009) Choosing not to choose: Reproductive responses of parents of children with genetic conditions or impairments. Sociology of Health and Illness 31(1): 81-97.
53. Kenen, R. (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.
54. Kerr, A. (2004) Genetics and citizenship. In: N. Stehr (ed.) Biotechnology between Commerce and Civil Society. New Brunswick: Transaction Press, pp. 159-174.
55. Kerr, A. and Cunningham-Burley, S. (2000) On ambivalence and risk: Reflexive modernity and the new human genetics. Sociology 34(2): 283-304.
56. Knoppers, B.M. and Chadwick, R. (2005) Human genetic research: Emerging trends in ethics. Nature 6: 75-79.
57. Koch, L. and Svendsen, M.N. (2005) Providing solutions-Defining problems: The imperative of disease prevention in genetic counselling. Social Sciences and Medicine 60(4): 823-832.
58. Konrad, M. (2005) Narrating the New Predictive Genetics: Ethics, Ethnography and Science. Cambridge: Cambridge University Press.
59. Lemke, T. (2004) Disposition and determinism-Genetic diagnostics in risk society. The Sociological Review 52(4): 550-66.
60. Lemke, T. (2011) Biopolitics: An Advanced Introduction. New York: New York University Press.
61. 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.
62. Lock, M., Freeman, J., Chilibeck, G., Beveridge, B. and Padolsky, M. (2007) Susceptibility genes and the question of embodied identity. Medical Anthropology Quarterly 21(3): 256-276.
63. Lupton, D. (1995) The Imperative of Health: Public Health and the Regulated Body. London: Sage
64. Lupton, D. (2012) M-health and health promotion: The digital cyborg and surveillance society. Social Theory and Health 10(3): 229-244.
65. Mackenzie, C. and Stoljar, N. (eds.),(2000) Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. Oxford: Oxford University Press.
66. Makowsky, R. et al (2011) Beyond missing heritability: Prediction of complex traits. PLoS Genetics 7(4): e1002051.
67. Mansfield, C., Hopfer, S. and Marteau, T.M. (1999) Termination rates after prenatal diagnosis of Down Syndrome, Spina Bifida, Anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenatal Diagnosis 19(9): 808-812.
68. Marteau, T.M. and Lerman, C. (2001) Genetic risk and behavioral change. British Medical Journal 322(7293): 1056-1059.
69. Marteau, T.M., Roberts, S., LaRusse, S. and Green, R. (2005) Predictive genetic testing for Alzheimer's disease: Impact upon risk perception. Risk Analysis 25(2): 397-404.
70. McBride, C.M., Koehly, L.M., Sanderson, S.C. and Kaphingst, K.A. (2010) The behavioral response to personalized genetic information: Will genetic risk profiles motivate individuals and families to choose more healthful behaviors Annual Review of Public Health 31(1): 89-103
71. Mol, A. (2008) The Logic of Care: Health and the Problem of Patient Choice. London: Routledge.
72. Mulhall, S. and Swift, A. (1996) Liberals and Communitarians, 2nd edn. Oxford: Blackwell
73. Mutton, D., Ihde, R. and Alberman, E. (1998) Trends in prenatal screening for and diagnosis of Down's Syndrome: England and Wales, 1989-97. British Medical Journal 317(7163): 922-923.
74. Nelkin, D. and Lindee, M.S. (1995) The DNA Mystique: The Gene as a Cultural Icon. New York: W.H. Freeman.
75. Nelson, A. (2008) Bio science: Genetic genealogy testing and the pursuit of African ancestry. Social Studies of Science 38(5): 759-783.
76. Nettleton, S. (2006) Sociology of Health and Illness. London: Polity Press.
77. Novas, C. and Rose, N. (2000) Genetic risk and the birth of the somatic individual. Economy and Society 29(4): 484-513.
78. Parsons, E. and Atkinson, P. (1992) Lay constructions of genetic risk. Sociology of Health & Illness 14(4): 439-455.
79. Petersen, A. (1997) Risk, governance and the new public health. In: A. Petersen and R. Bunton (eds.) Foucault, Health and Medicine. London: Routledge, pp. 189-206.
80. Petersen, A. (2003) Governmentality, critical scholarship, and the medical humanities. Journal of Medical Humanities 24(3/4): 187-200.
81. Petersen, A. and Bunton, R. (eds.)1997) Foucault, Health and Medicine. London:Routledge.
82. Petersen, A., Davis, M., Fraser, S. and Lindsay, J. (2010) Healthy living and citizenship: An overview. Critical Public Health 20(4): 391-400.
83. Plows, A. and Boddington, P. (2006) Troubles with biocitizenship Genomics, Society and Policy 2(3): 115-135.
84. Polzer, J., Mercer, S.L. and Goel, V. (2002) Blood is thicker than water: Genetic testing as citizenship through familial obligation and the management of risk. Critical Public Health 12(2): 153-168.
85. Prainsack, B. and Buyx, A. (2013) A solidarity-based approach to the governance of research biobanks. Medical Law Review 21(1): 71-91.
86. Press, N. (2008) Genetic testing and screening. In: M. Crowley (ed.) From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns. Garrison, NY: The Hastings Center, pp. 73-78.
87. Rabinow, P. (1992) Artificiality and enlightenment: From sociobiology to biosociality. In: J. Crary and S. Kwinter (eds.) Incorporations. New York: Zone, pp. 234-252.
88. Rabinow, P. (1996) Essays on the Anthropology of Reason. Princeton, NJ: Princeton University Press.
89. Rabinow, P. and Rose, N. (2006) Biopower today. Biosocieties 1(2): 195-217.
90. Raman, S. and Tutton, R. (2010) Life, science and biopower. Science, Technology and Human Values 35(5): 711-734.
91. Rapp, R. (1999) Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.
92. Raspberry, K. and Skinner, D. (2011) Enacting genetic responsibility: Experiences of mothers who carry the fragile X gene. Sociology of Health and Illness 33(3): 420-433.
93. Richards, M. (1996) Lay and professional knowledge of genetics and inheritance. Public Understanding of Science 5(3): 217-230.
94. Rose, N. (2007) The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-first Century. Princeton, NJ: Princeton University Press.
95. Rose, N. and Novas, C. (2005) Biological citizenship. In: A. Ong and S. Collier (eds.) Global Assemblages: Technology, Politics and Ethics as Anthropological Problems. Oxford: Blackwell, pp. 439-463.
96. Roukos, D. and Briasoulis, E. (2007) Individualized preventive and therapeutic management of hereditary breast ovarian cancer syndrome. Nature Clinical Practice Oncology 4(10): 578-590.
97. Silva, V.T. (2005) In the beginning was the gene: The hegemony of genetic thinking in contemporary culture. Communication Theory 15(1): 100-123.
98. Svendsen, M.N. (2006) The social life of genetic knowledge: A case-study of choices and dilemmas in cancer genetic counselling in Denmark. Medical Anthropology: Cross-cultural Studies in Health and Illness 25(2): 139-170.
99. Taussig, K.S., Rapp, R. and Heath, D. (2003) Flexible eugenics: Technologies of the self in the age of genetics. In: A. Goodman, D. Heath and M.S. Lindee (eds.) Genetic Nature/Culture. Berkeley, CA: University of California Press, pp. 58-76.
100. Terry, J. (1989) The body invaded: Medical surveillance of women as reproducers. Socialist Review 19(3): 13-43.
101. Turner, B.S. (1997) Forward: From governmentality to risk, some reflections on Foucault's contribution to medical sociology. In: A. Petersen and R. Bunton (eds.) Foucault, Health and Medicine. London: Routledge, pp. ix-xxi
102. Veinot, T. (2010) Power to the patient A critical examination of patient empowerment discourses. In: R. Harris, N. Wathen and S. Wyatt (eds.) Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. New York: Palgrave Macmillan, pp. 30-41.
103. Wagner Costalas, J. et al (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: A cancer risk assessment program's experience. American Journal of Medical Genetics Part C 119C(1): 11-18.
104. Widdows, H. (2009) Between the individual and the community: The impact of genetics on ethical models. New Genetics and Society 28(2): 173-188.
105. Widdows, H. (2013) The Connected Self: The Ethics and Governance of the Genetic Individual. Cambridge: Cambridge University Press.
106. Wiens, M.E., Wilson, B.J., Honeywell, C. and Etchegary, H. (2013) A family genetic risk communication framework: Guiding tool development in genetics health services. Journal of Community Genetics 4(2): 233-242.
107. Wright, C., Kerzin-Storrar, L., Williamson, P.R., Fryer, A. and Njindou, A. (2003) Comparison of genetic services with and without genetic registers: Knowledge, adjustment and attitudes about genetic counselling among probands referred to three genetic clinics. Journal of Medical Genetics 39(12): e84
108. Wyatt, S., Harris, R. and Wathen, N. (eds.) (2010) Health(y) citizenship: Technology, work and narratives of responsibility. In: Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility. New York: Palgrave Macmillan, pp. 1-10.