Providing solutions-defining problems: The imperative of disease prevention in genetic counselling

Social Science and Medicine

Volumn 60, Issue 4, 2005, Pages 823-832

  Koch, Lene ^a   Nordahl Svendsen, Mette ^b  

^a UNIVERSITY OF COPENHAGEN   (Denmark)

^b Dansk Sundhedsinstitut   (Denmark)

Author keywords

Denmark; Disease prevention; Genetic counselling; Governmentality; Informed consent; Non directiveness

Indexed keywords

CANCER;

CANCER GENETICS; CLINICAL GENETICS; CLINICAL PRACTICE; DENMARK; DISEASE CONTROL; DISEASE TRANSMISSION; GENETIC COUNSELING; GENETIC DISORDER; GENETIC RISK; GOVERNMENT; HUMAN; INFORMED CONSENT; PROBLEM SOLVING; PROPHYLAXIS; REVIEW;

EID: 9644307885     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2004.06.019     Document Type: Article

References (47)

1. Brøndum-Nielsen K. Genetic services in Denmark. European Journal of Human Genetics. 5(Suppl. 2):1997;64-68
2. Buchanan A., Brock D., Daniels N., Wikler D. From chance to choice, genetics and justice. 2000;Cambridge University Press, Cambridge
3. Chadwick, R. (1997). The philosophy of the right to know and the right not to know. In R. Chadwick, M. Levitt, & D. Schickle (Eds.), The right to know and the right not to know. Aldershot: Avebury.
4. Clarke A. Genetics, ethics, and audit. The Lancet. 335:1990;1145-1147
5. Clarke A. Is non-directive genetic counselling possible? The Lancet. 338:1991;998-1002
6. D'Agincourt-Canning L. Experiences of genetic risk. Disclosure and gendering of responsibility Bioethics. 15:2001;231-247
7. Doukas D.J., Berg J.W. The family covenant and genetic testing. American Journal of Bioethics. 1:2001;3-10
8. Duster T. Backdoor to eugenics. 1990;Routledge, New York
9. Emery J. Is informed choice in genetic testing a different breed of informed decisionmaking? Health Expectations. 4:2001;81-86
10. ESHG (2001). Provision of genetic services in Europe - current practices and issues. Recommendations of the European Society of Human Genetics. http://www.eshg.org/〉www.eshg.org.
11. Foucault, M. (1986). The subject and power. In H. L. Dreyfus, & P. Rabinow (Eds.), Michel foucault: Beyond structuralism and hermeneutics. London: The Harvester Press.
12. Foucault, M. (1988). Technologies of the self. In L. H. Martin, H. Gutman, & P. H. Hutton (Eds.), Technologies of the self. A seminar with Michel Foucault. Amherst: The University of Massachusetts Press.
13. Foucault, M. (1991). Governmentality. In B. Burchell, C. Gordon, & P. Miller (Eds.), The Foucault effect - studies in governmentality. London: Harvester Wheatsheaf.
14. Habermas J. The future of human nature. 2003;Blackwell, London
15. Hacking I. The Looping Effects of Human Kind. Speber D., Premack D., James Premack A. Casual Cognition. A Multidisciplinary Debate. 1995;Clarendon Press, Oxford
16. Hacking, I. (1996). Memory science, memory politics. In Antze, Paul, & Michael Lambek (Eds.), Tense past. Cultural essays in Trauma and memory. New York: Routledge.
17. Hallowell N. Doing the right thing. Genetic risk and responsibility Sociology of Health & Illness - A Journal of Medical Sociology. 21:1999;597-621
18. Hallowell N., Foster C., Eeles R., Ardern-Jones A., Murday V., Watson M. Balancing autonomy and responsibility. The ethics of generating and disclosing genetic information Journal of Medical Ethics. 29:2003;74-83
19. Harris R. Genetic counselling and testing in Europe. Journal of the Royal College of Physicians of London. 32(4):1998;335-338
20. Headings V.E. Revisiting foundations of autonomy and beneficence in genetic counseling. Genetic Counseling. 8(4):1997;291-294
21. Huibers, A. K., & Spijker, A. (1998). The autonomy paradox: Predictive genetic testing and autonomy: three essential problems. Patient Education and Counseling, 53-62.
22. Jennings, B. (2003). Genetic citizenship. Knowledge and empowerment in personal and civic health. A concept paper. The Hastings Center, New York. Unpublished.
23. Jöhncke, S., Svendsen, M. N., & Whyte, S. R. (2004). Løsningsmodeller. Sociale teknologier som antropologisk arbejdsfelt. In K. Hastrup, (Ed.), Viden om verden. En grundbog om antropologisk analyse. København: Reitzel.
24. Keller E.F. Secrets of life, secrets of death. Essays on language, gender and science:1992;Routledge, New York
25. Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Nondirectiveness revisited. American Journal of Medical Genetics, 164-171.
26. Koch, L. (2002). The Government of genetic knowledge. In S. Lundin, & L. Åkesson (Eds.), Gene technology and economy. Lund: Nordic Academic Press.
27. Laurie G.T. In defence of ignorance. Genetic information and the right to not know European Journal of Health Law. 6:1998;119-132
28. Lemke T. Genetic testing, eugenics and risks. Critical Public Health. 12:2002;283-290
29. Mulhall S., Swift A. Liberals and communitarians. 1997;Blackwell, Oxford
30. Odunco F.S. The role of non-directiveness in genetic counseling. Medicine, Healthcare and Philosophy. 5:2002;53-63
31. O'Neill O. Autonomy and trust in bioethics. 2002;Cambridge University Press, Cambridge
32. Petersen A. Counselling the genetically at risk. The poetics and politics of "non-directiveness" Health, Risk and Society. 1:1999;253-266
33. Petersen, A. (2002). Genetic citizenship: Acting "responsibly" in the age of biotechnology. Unpublished paper.
34. Petersen A., Bunton R. The new genetics and the public's health. 2002;Routledge, London
35. Rabinow P. Artificiality and enlightenment. From sociobiology to biosociality. Essays on the Anthropology of Reason:1996;Princeton University Press, Princeton
36. Rose N. Government, authority and expertise in advanced liberalism. Economy and Society. 22(3):1993;283-299
37. Rose N. The powers of freedon. 1999;Cambridge University Press, Cambridge
38. Sachs L. Att leva med risk. 1998;Gedins Förlag, Smedjebacken
39. Shore, C., & Wright, S. (1997). Policy: A new field of anthropology. In C. Shore, & S. Wright (Eds.), Anthropology of policy: Critical perspectives on governance and power. London: Routledge.
40. Skene L. Patient's rights or family responsibilities. Medical Law Review. 6:1998;1-41
41. Spector M., Kitsuse J.I. Constructing social problems. 2001;Transaction Publishers, New Brunswick
42. Strathern M. After nature. English kinship in the late twentieth century:1992;Cambridge University Press, Cambridge
43. Svendsen, M. N. (2004). The space in the gap. A study of the social implications of cancer genetic counselling and testing in Denmark. Ph.D-række nr.26, Copenhagen: Institute of Anthropology.
44. White M.T. Decision-making through dialogue. Reconfiguring autonomy in genetic counseling Theoretical Medicine and Bioethics. 19(1):1998;5-19
45. WHO (1998). Proposed international guidelines on ethical issues in medical genetics and genetic services. Report of a WHO meeting on ethical issues in medical genetics.
46. Whyte, S. R. Misfortune and hope: Global languages and local lives. In Casey, Conrely, & R. Edgerton (Eds.), Companion to psychological anthropology: Modernity and psychocultural change. London: Blackwell, in press.
47. Williams C., Alderson P., Farsides B. In nondirectiveness possible within the context of antenatal screening and testing? Social Science & Medicine. 54:2002;339-347