Beyond informed choice: Prenatal risk assessment, decision-making and trust

Clinical Ethics

Volumn 5, Issue 4, 2010, Pages 207-216

  Schwennesen, Nete ^a   Svendsen, Mette Nordahl ^a   Koch, Lene ^a  

^a UNIVERSITY OF COPENHAGEN   (Denmark)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84992866270     PISSN: 14777509     EISSN: 1758101X     Source Type: Journal    
DOI: 10.1258/ce.2010.010041     Document Type: Article

References (54)

1. Alfirevic Z, Sundberg K, Brigham S. Amniocentesis and chorionic villus sampling for prenatal diagnosis. Cochrane Database Syst Rev 2003; 3: CD003252.
2. Bioteknologinemnda. Søknad om å tilby blodprøverundersøkelser (‘dobbeltest og trippeltest’) til gravide kvinner som opfyller et eller flere av dagens vilkår for fosterdiagnostik. Oslo: Bioteknologinemnda, 2005.
3. Social departementet. Genetisk integritet mm. Stockholm: Socialdepartementet, Prop.2005/06:64, 2006.
4. Kristjánsdóttir H. Formand for Nordisk Jordemor Forening (NFJ) (President for the Nordic Midwife Association). Personal communication, 2008.
5. Tørring N, Jølving LR, Petersen OBB, Holmskov A, Hertz JM, Uldbjerg N. Prænatal diagnostik i Århus og Viborg Amter efter implementering af første trimester-risikovurdering. Ugeskrift for læger 2008; 170: 50–4.
6. Tabor A. Professor in foetal medicine, Rigshospitalet. Personal communication. Copenhagen, Denmark, 2006.
7. Sundhedsstyrelsen [Danish Board of Health]. Fosterdiagnostik og risikovurdering [Prenatal Diagnosis and Risk Assessment]. Copenhagen: Schultz Information, 2003.
8. Sundhedsstyrelsen [Danish Board of Health]. Notat vedrørende nye retningslinjer for fosterdiagnostik.[Note Regarding New Guidelines of Prenatal Diagnosis]. Copenhagen: Danish Board of Health, 2003.
9. Sundhedsstyrelsen [Danish Board of Health]. Nye retningslinjer for fosterdiagnostik [New Guidelines for Prenatal Diagnosis]. Copenhagen: Danish Board of Health, 2004.
10. Franklin S, Roberts C. Born and Made. An Ethnography of Preimplantation Genetic Diagnosis. NJ: Princeton University Press, 2006.
11. Helén I. Risk management and ethics in antenatal care. In: Bunton R, Petersen A, eds. Genetic Governance. Health, Risk and Ethics in the Biotech Era. London: Routledge, 2005: 47–63.
12. Kerr A. Reproduction. In: Kerr A, ed. Genetics and Society. London: Routledge, 2004: 64–83.
13. Rapp R. Testing women, testing the fetus. In: The Social Impact of Amniocentesis in America. New York: Routledge, 2000.
14. Lupton D. Risk and the ontology of pregnant embodiment. In: Lupton D, ed. Risk and Sociocultural Theory: New Directions and Perspectives. New York: Cambridge University Press, 1999: 59–85.
15. Lock M. Perfecting society: reproductive technologies, genetic testing, and the planned family in Japan. In: Lock M, Kaufert PA, eds. Pragmatic Women and Body Politics. Cambridge: Cambridge University Press, 1998: 206–39.
16. Weir L. Recent developments in the government of pregnancy. Econ Soc 1996; 25: 373–92.
17. Snijders R, Noble P, Sebire N, Souka A, Nicolaides KH. UK multicentre project on assessment of risk of trisomy 21 by maternal age and fetal nuchal translucency thickness at 10–14 weeks of gestation. Lancet 1998; 351: 343–6.
18. Lemke T. From eugenics to the government of genetic risks. In: Bunton R, Petersen R, eds. Genetic Governance. Health, Risk and Ethics in the Biotech Era, London: Routledge, 2005: 95–106.
19. Rose N. The politics of life itself. Theory, Culture and Society, 2001; 18: 1–30.
20. Dahl K, Kesmodel U, Hvidman L, Olesen F. Informed consent: attitudes, knowledge and information concerning prenatal examinations. Acta Obstet Gynecol Scand 2006; 85: 1414–9.
21. Dahl K, Kesmodel U, Hvidman L, Olesen F. Informed consent: providing information about prenatal examinations. Acta Obstet Gynecol Scand 2006; 85: 1420–5.
22. Hunt LM, Castaneda H, de Voogd KB. Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counselling. Med Anthropol 2006; 25: 193–219.
23. Harper PS. Practical Genetic Counselling. London: Arnold, 2004.
24. Marteau TM, Dormandy E. Facilitating informed choice in prenatal testing: how well are we doing? Am J Med Genet 2001; 106: 185–90.
25. Marteau TM, Dormandy E, Michie S. A measure of informed choice. Health Expect 2001; 4: 99–108.
26. Van den Berg M, Timmermans DRM, ten Kate LP, van Vugt JMG, van der Wal G. Informed decision making in the context of prenatal screening. Patient Educ Counsel 2006; 63: 110–7.
27. Svendsen MN, Koch L. Genetics and prevention: a policy in the making. New Genet Soc 2006; 25: 51–68.
28. Jöhncke S, Svendsen MN, Whyte SR. Løsningsmodeller. Sociale teknologier som antropologisk arbejdsfelt. In: Hastrup K, ed. Viden om verden. En grundbog i antropologisk analyse. Copenhagen: Hans Reitzel Forlag, 2004: 385–407.
29. Shore C, Wright S. Policy: a new field of anthropology. In: Shore C, Wright S, eds. Anthropology of Policy: Critical Perspectives on Governance and Power, London: Routledge, 1997: 3–39.
30. Hoeyer K. Studying ethics as policy: the naming and framing of moral problems in genetic research. Curr Anthropol 2005; 46: 71–90.
31. Konrad M. Narrating the New Predictive Genetics. Ethics, Ethnography and Science. Cambridge: Cambridge University Press, 2005.
32. Schwennesen N. Forplantning, valg og viden. Om præ-implantationsdiagnostikkens (PGD) moralske og sociale implikationer. GRUS 2005; 26: 84–97.
33. Corrigan O. Empty ethics: the problem with informed consent. Sociol Health Illness 2003; 25: 768–92.
34. Hoffmaster BM, ed. Bioethics in Social Context. Philadelphia: Temple University Press, 2001.
35. Howell S, ed. The Ethnography of Moralities. London: Routledge, 1997.
36. Hedgecoe AM. Critical bioethics: beyond the social science critique of applied ethics. Bioethics 2004; 18: 120–43.
37. Haimes E. What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics 2002; 16: 89–113.
38. Folketingsvedtagelse af 15 maj 2003 vedrørende fosterdiagnostik, V105. [Parliamentary Decision on Prenatal Diagnosis, 15 May 2003].
39. Indenrigsministeriet [Ministry of the Interior] Betænkning om prænatal genetisk diagnostic [Report about Prenatal Genetic Diagnosis], nr. 803. Copenhagen: The Danish Publish House, 1997.
40. Nicolaides KH. The 11–13 Week Scan. London: Fetal Medicine Foundation, 2004.
41. Koch L. Fosterundersøgelser og selvbestemmelse. Månedsskrift for praktisk lægegerning, 2003: 989–1002.
42. Ekelund CK, Joergensen FS, Petersen OB, Sundberg K, Tabor A. Impact of a new national screening policy for Down's syndrome in Denmark: population based cohort study. Br Med J 2008; 337: a2547.
43. Lou S, Dahl K, Risør MB, Hvidman L, Thomsen SG, Jørgensen FS. En kvalitativ undersøgelse af gravides valg af nakkefoldsskanning. Ugeskrift for læger 2007; 169: 914–8.
44. Webster A. Crossing boundaries. Social science in the policy room. Sci, Technol Hum Values 2007; 32: 458–78.
45. Gifford SM. The meaning of lumps: A case study of the ambiguities of risk. In: Lock M, Young A, Gaines AD, eds. Anthropology and Epidemiology. Dordrecht: D. Reidel Publishing Company, 1986: 231–49.
46. Jenkins R, Jessen H, Steffen V. Matters of life and death. The control of uncertainty and the uncertainty of control. In: Jenkins R, Jessen H, Steffen V, eds. Managing Uncertainty. Ethnographic Studies of Illness, Risk and the Struggle for Control. Copenhagen: Museum Tusculanum Press, 2005: 9–29.
47. Lupton D. Foucault and the medicalisation critique. In: Petersen A, Bunton R, eds. Foucault, Health and Medicine. London: Routledge, 1997: 94–110.
48. Petersen A, Bunton R. The New Genetic and Public's Health. London: Routledge, 2002.
49. Novas C, Rose N. Genetic risk and the birth of the somatic individual. Economy & Society, 2000; 29: 485–513.
50. Ormond KE, Iris M, Banuvar S, Miogue J, Annas GJ, Elias S. What do patients prefer: informed consent models for genetic carrier testing. J Genet Counsel 2007; 16: 539–50.
51. Pilnick A. ‘It's just one of the best tests that we've got at the moment’: the presentation of nuchal translucency screening for fetal abnormality in pregnancy. Discourse Soc 2004; 15: 451–65.
52. Williams C, Sandall J, Lewando-Hundt G, Heyman B, Spencer K, Grellier R. Women as moral pioneers? Experiences of first trimester antenatal screening. Soc Sci Med 2002; 61: 1983–92.
53. Chadwick R. The philosophy of the right to know and the right not to know. In: Chadwick R, Levitt M, Shickle D, eds. The Right to Know and the Right Not to Know. Aldershot: Ashgate, 1997: 13–22.
54. Solberg B. Associate Professor in Bioethics, NTNU, Norway, personal communication, 2008.