From policy making to service use. Down's syndrome antenatal screening in england, france and the netherlands

Social Science and Medicine

Volumn 106, Issue , 2014, Pages 67-74

  Vassy, Carine ^a   Rosman, Sophia ^b   Rousseau, Bénédicte ^a  

^a UNIVERSITÉ PARIS 13   (France)

^b CNRS   (France)

Author keywords

Down's syndrome; England; France; Informed consent; Netherlands; Policy; Screening

Indexed keywords

GENETICS; HEALTH POLICY; HEALTH SERVICES; INNOVATION; POLICY IMPLEMENTATION; POLICY MAKING;

ARTICLE; CONSULTATION; DOWN SYNDROME; FETUS ECHOGRAPHY; FIRST TRIMESTER PREGNANCY; FRANCE; HEALTH CARE ACCESS; HEALTH CARE POLICY; HEALTH CARE SYSTEM; HEALTH CARE UTILIZATION; HUMAN; INFORMED CONSENT; MEDICAL DECISION MAKING; NETHERLANDS; NUCHAL TRANSLUCENCY MEASUREMENT; PRENATAL SCREENING; SOCIAL ASPECT; UNITED KINGDOM; WOMEN'S HEALTH;

ENGLAND; FRANCE; NETHERLANDS; UNITED KINGDOM;

DOWN'S SYNDROME; ENGLAND; FRANCE; INFORMED CONSENT; NETHERLANDS; POLICY; SCREENING;

DOWN SYNDROME; ENGLAND; FEMALE; FRANCE; HEALTH POLICY; HUMANS; NETHERLANDS; POLICY MAKING; PREGNANCY; PRENATAL DIAGNOSIS;

EID: 84896870910     PISSN: 02779536     EISSN: 18735347     Source Type: Journal    
DOI: 10.1016/j.socscimed.2014.01.046     Document Type: Article

References (52)

1. ABM Rapport médical et scientifique de l'assistance médicale à la procréation et de la génétique humaine en France 2013, Agence de la Biomédecine.
2. Akrich M. The description of technical objects. Shaping Technology, Building Society 1992, 205-224. MIT Press, Cambridge. W. Bijker, J. Law (Eds.).
3. Akrich M., Pasveer B. Comment la naissance vient aux femmes. Les techniques de l'accouchement en France et aux Pays-Bas 1996, Synthélabo, Le Plessis-Robinson.
4. Alaszewski A., Brown P. Making Health Policy 2012, Polity Press, Cambridge.
5. Armstrong N., Eborall H. The sociology of medical screening: past, present and future. Sociology of Health and Illness 2012, 34:161-176.
6. Asch A. Prenatal diagnosis and selective abortion: a challenge to practice and policy. American Journal of Public Health 1999, 89:1649-1657.
7. Baszanger I., Gaudillière J.P., Löwy I. Avant-propos. Sciences sociales et santé 2000, 18:5-8.
8. Benamouzig D. Système de santé. Santé publique: l'état des savoirs 2010, 317-328. La Découverte, Paris. D. Fassin, B. Hauray (Eds.).
9. Blondel B., Kermarrec M. Enquête nationale périnatale. Les naissances en 2010 et leur évolution depuis 2003 2011, Rapport Inserm.
10. Carricaburu D. De la gestion technique du risque à celle du travail: l'accouchement en hÔpital public. Sociologie du Travail 2005, 47:245-262.
11. Champenois-Rousseau B., Vassy C. Les échographistes face au dépistage prénatal de la trisomie 21. Le difficile arbitrage entre excellence professionnelle et éthique du consentement. Sciences sociales et santé 2012, 30(4):39-63.
12. Crombag N., Bensing J., Iedema-Kuper R., Schielen P., Visser G. Determinants affecting pregnant women's utilization of prenatal screening for Down syndrome: a review of the literature. Journal of Maternal-Fetal & Neonatal Medicine 2013, 26:1676-1681.
13. DeVries R., Salvesen H., Wiegers T., Williams A. What (and why) do women want? The desire of women and the design of maternity care. Birth by Design: Pregnancy, Maternity Care, and Midwifery in North America and Europe 2001, 243-266. Routledge, New York. R. De Vries, C. Benoit, E. van Teijlingen, S. Wrede (Eds.).
14. Dormandy E., Michie S., Hooper R., Marteau Th. Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices?. International Journal of Epidemiology 2005, 34:346-352.
15. Faulkner A. Resisting the screening imperative: patienthood, populations and politics in prostate cancer detection technologies for the UK. Sociology of Health and Illness 2012, 34:221-233.
16. Favre R., et al. How important is consent in maternal serum screening for Down syndrome in France?. Prenatal Diagnosis 2007, 27:197-205.
17. Fracheboud J., van Agt H., de Koning M. Monitoring 2009. Screeningsprogramma Downsyndroom, Structureel Echoscopisch Onderzoek 2011, Erasmus MC, Rotterdam.
18. Fransen M.P., Schoonen M.H., Mackenbach J.P., et al. Ethnic differences in participation in prenatal screening for Down syndrome: a register-based study. Prenatal Diagnosis 2010, 30:988-994.
19. Garne E., Khoshnood B., Loane M., Boyd P., Dolk H. Termination of pregnancy for fetal anomaly after 23 weeks of gestation: a European register-based study. British Journal of Obstetrics and Gynaecology 2010, 117:660-666.
20. Green J.M., Statham H. Psychosocial aspects of prenatal screening and diagnosis. The Troubled Helix 1996, 140-163. Cambridge University Press, Cambridge. T. Marteau, M. Richards (Eds.).
21. Griffiths L. Making connections: studies of the social organisation of healthcare. Sociology of Health & Illness 2003, 25:155-171.
22. Hantrais L., Mangen S. Cross National Research Methods 1996, Pinter, London.
23. HAS Comment mieux informer les femmes enceintes 2005, Haute Autorité de Santé, Saint-Denis.
24. Hingstman L., Kenens R. Cijfers uit de registratie van verloskundigen. Peiling 2010 2010, NIVEL, Utrecht, (Report).
25. Katz-Rothman B. Spoiling the pregnancy: prenatal diagnosis in the Netherlands. Birth by Design: Pregnancy, Maternity Care, and Midwifery in North America and Europe 2001, 180-198. Routledge, New York. R. De Vries, C. Benoit, E. van Teijlingen, S. Wrede (Eds.).
26. Kerr A. Genetics and Society 2004, Routledge, London.
27. Khoshnood B., Blondel B., De Vigan C., Bréart G. Socioeconomic barriers to informed decision-making regarding maternal serum screening for Down syndrome: results of the French national perinatal survey of 1998. American Journal of Public Health 2004, 94:484-491.
28. Marteau Th., Slack J., Kidd J., Shaw R. Presenting a routine screening test in antenatal care: practice observed. Public Health 1992, 106:131-141.
29. NICE Antenatal Care: Routine Care for the Healthy Pregnant Woman 2003, National Institute for Clinical Excellence.
30. NSC NHS Fetal Anomaly Screening Programme - Screening for Down's Syndrome: UK National Screening Committee Policy Recommendations 2007-2010 2008.
31. Oakley A. Essays on Women, Medicine and Health 1993, Edinburgh University Press, Edinburgh.
32. Pasveer B., Akrich M. Obstetrical trajectories: on training women/bodies for (home) birth. Birth by Design: Pregnancy, Maternity Care, and Midwifery in North America and Europe 2001, 229-242. Routledge, New York. R. De Vries, C. Benoit, E. van Teijlingen, S. Wrede (Eds.).
33. Petrogiannis K., Tymstra T., Jallinoja P., Ettore E. Review of policy, law and ethics. Before Birth. Understanding Prenatal Screening 2001, 38-52. Ashgate, Aldershot. E. Ettore (Ed.).
34. Pilnick A. It's something for you both to think about': choice and decision making in nuchal translucency screening for Down's syndrome. Sociology of Health and Illness 2008, 30:511-530.
35. Popkema M., Harbers H. The cultural politics of prenatal screening. Inside the Politics of Technology. Agency and Normativity in the Co-production of Technology and Society 2005, 229-256. Amsterdam University Press, Amsterdam. H. Harbers (Ed.).
36. Press N., Browner C.H. Why women say yes to prenatal diagnosis. Social Science & Medicine 1997, 45:979-989.
37. Rapp R. Testing Women, Testing the Fetus 2000, Routledge, New York.
38. Reid M. The Diffusion of Four Prenatal Screening Tests Across Europe 1991, King's Fund Centre, London.
39. Reid B., Sinclair M., Barr O., Dobbs F., Crealey G. Ameta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome. Social Science & Medicine 2009, 69:1561-1573.
40. Sandall J., Grellier R., Ahmed S. Prenatal screening and diagnosis in a multicultural, multi-ethnic society. Prenatal Diagnosis. The Human Side 2003, 83-97. Chapman and Hall, London. L. Abramsky, J. Chapple (Eds.).
41. Schielen P.C. Quality Control Parameters of the Dutch Down Syndrome Screening Laboratories 2009 2011, National Institute for Public Health and the Environment, Utrecht.
42. Schwennesen N., Svendsen M., Koch L. Beyond informed choice: prenatal risk assessment, decision-making and trust. Clinical Ethics 2010, 5:207-216.
43. Seror V., Ville Y. Prenatal screening for Down syndrome: women's involvement in decision-making and their attitudes to screening. Prenatal Diagnosis 2009, 29:120-128.
44. Sicard D. La France au risque de l'eugénisme. Le Monde 2007, 4 février.
45. Stemerding D., Van Berkel D. Maternal serum screening, political decision-making and social learning. Health Policy 2001, 56:111-125.
46. Thornton J. Should Health Screening be Private? 1999, IEA Health & Welfare Unit, London.
47. Tsouroufli M. Routinisation and constraints on informed choice in a one-stop clinic offering first trimester chromosomal antenatal screening for Down's syndrome. Midwifery 2011, 27:431-436.
48. Vassy C. From a genetic innovation to mass health programmes: the diffusion of Down's syndrome prenatal screening and diagnostic techniques in France. Social Science & Medicine 2006, 8:2041-2051.
49. Vassy C. De l'innovation biomédicale à la pratique de masse: le dépistage prénatal de la trisomie 21 en Angleterre et en France. Sciences Sociales et Santé 2011, 29(3):5-32.
50. Ward P. Down's Syndrome Screening in England 2011, NHS Fetal Anomaly Screening Programme; Committee UNS.
51. Ward P. FASP Progress Update 2011, NHS Screening Programmes, Fetal Anomaly, Spring.
52. Williams Cl., Alderson P., Farsides B. Is nondirectiveness possible within the context of antenatal screening and testing?. Social Science & Medicine 2002, 54:17-25.