Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: A randomised controlled trial of two questionnaires

Ethnicity and Health

Volumn 11, Issue 2, 2006, Pages 169-189

  Dyson, Simon M ^a   Culley, Lorraine ^b   Gill, Cynthia ^b   Hubbard, Stephanie ^b   Kennefick, Ann ^b   Morris, Patsy ^b   Rees, David ^b   Sutton, Faye ^b   Squire, Patricia ^b  

^a DE MONTFORT UNIVERSITY   (United Kingdom)

^b NONE

Author keywords

Ethnicity; Screening; Sickle Cell; Thalassaemia

Indexed keywords

ETHNICITY; GENE; HEALTH AND DISEASE; HEALTH SURVEY; MEDICAL GEOGRAPHY;

ANALYTICAL ERROR; ARTICLE; CLINICAL TRIAL; COMMUNITY ASSESSMENT; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; ETHNOLOGY; FAMILY HISTORY; FEMALE; GENETIC EPIDEMIOLOGY; GENETIC SCREENING; GEOGRAPHIC DISTRIBUTION; HEALTH PROGRAM; HETEROZYGOSITY; HIGH RISK PREGNANCY; HUMAN; LABORATORY TEST; MAJOR CLINICAL STUDY; OPEN ENDED QUESTIONNAIRE; OUTPATIENT DEPARTMENT; PREGNANT WOMAN; PRENATAL CARE; PRENATAL SCREENING; PREVALENCE; RANDOMIZATION; RANDOMIZED CONTROLLED TRIAL; RISK ASSESSMENT; SCREENING TEST; SICKLE CELL; STATISTICAL ANALYSIS; STRUCTURED INTERVIEW; THALASSEMIA;

ADULT; ENGLAND; FAMILY; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HUMANS; INFANT, NEWBORN; INTERVIEWS; MIDWIFERY; PEDIGREE; PREGNANCY; PRENATAL DIAGNOSIS; QUESTIONNAIRES; SICKLE CELL TRAIT; THALASSEMIA;

ENGLAND; EURASIA; EUROPE; UNITED KINGDOM; WESTERN EUROPE;

EID: 33645775290     PISSN: 13557858     EISSN: None     Source Type: Journal    
DOI: 10.1080/13557850500460348     Document Type: Article

References (40)

1. Andrews, L. B., Fullarton, J. E., Holtzman, N. A. & Motulsky, A. G. (eds) (1994) Assessing Genetic Risks: Implications for Health and Social Policy, National Academy Press, Washington, DC.
2. Anionwu, E. N. & Atkin, K. (2001) The Politics of Sicke Cell and Thalassaemia, Open University Press, Buckingham.
3. Aspinall, P. J. & Dyson, S. M. (2002) Secondary Review of Existing Information in Relation to the Ethnic Question, NHS Sickle Cell/Thalassaemia Screening Programme, London. Available at: http://www.kcl-phs.org.uk/ haemscreening/publications.htm#EQUANS%20Review (accessed 17 October 2003).
4. Aspinall, P. J., Dyson, S. M. & Anionwu, E. N. (2003) 'The feasibility of using ethnicity as a primary tool for antenatal selective screening for sickle cell disorders: pointers from the research evidence', Social Science and Medicine, vol. 56, no. 2, pp. 285-297.
5. Atkin, K. & Ahmad, W. I. U. (1998) 'Genetic screening and haemoglobinopathies: ethics, politics and practice', Social Science and Medicine, vol. 46, no. 3, pp. 445-458.
6. Atkin, K., Ahmad, W. I. U. & Anionwu, E. (1998) 'Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals', Social Science and Medicine, vol. 47, no. 11, pp. 1639-1651.
7. Bain, B. J. & Chapman, C. (1998) 'A survey of current United Kingdom practice for antenatal screening for inherited disorders of globin chain synthesis', Journal of Clinical Pathology, vol. 51, no. 5, pp. 382-389.
8. Berthoud, R. (1998) 'Defining ethnic groups: origins or identity', Patterns of Prejudice, vol. 32, no. 2, pp. 53-63.
9. Bradby, H. (2003) 'Describing ethnicity in health research', Ethnicity & Health, vol. 8, no. 1, pp. 5-13.
10. British Society for Haematology (1988) 'Guidelines for haemoglobinopathy screening', Clinical Laboratory Haematology, vol. 10, pp. 87-94.
11. Culley, L. & Dyson, S. M. (eds) (2001) Ethnicity and Nursing Practice, Palgrave, Basingstoke.
12. Davies, S. C., Cronin, E., Gill, M., Greengross, P., Hickman, M. & Normand, C. (2000) 'Screening for sickle cell disease and thalassaemia systematic review with supplementary research', Health Technology Assessment, vol. 4, no. 3.
13. Department of Health (1993) The Report of the Working Party of the Standing Medical Advisory Committee on Sickle Cell, Thalassaemia and Other Haemoglobinopathies, HMSO, London.
14. Department of Health (2000) The NHS Plan: A Plan for Investment, a Plan for Reform, Stationery Office, London.
15. Dyson, S. M. (1998) '"Race", ethnicity and haemoglobin disorders', Social Science and Medicine, vol. 315, no. 37, pp. 121-131.
16. Dyson, S. M. (1999) 'Genetic screening and ethnic minorities', Critical Social Policy, vol. 19, no. 2, pp. 195-215.
17. Dyson, S. M. (2005) Ethnicity and Screening for Sickle Cell and Thalassaemia, Elsevier Churchill Livingstone, Oxford.
18. Ellison, G. T. H. (2005) '"Population profiling" and public health risk: when and how should we use race/ethnicity?', Critical Public Health, vol. 15, no. 1, pp. 65-74.
19. Fenton, S. (1999) Ethnicity, Racism, Class and Culture, Macmillan, London.
20. Gillborn, D. (1995) 'Racism, identity and modernity: pluralism, moral antiracism and plastic ethnicity', International Studies in Sociology of Education, vol. 5, no. 1, pp. 3-23.
21. Hickman, M., Modell, B., Greengross, P., Chapman, C., Layton, M., Falconer, S. & Davies, S. C. (1999) 'Mapping the prevalence of sickle cell and beta thalassaemia in England: estimating and validating ethnic-specific rates', British Journal of Haematology, vol. 104, pp. 860-867.
22. Hindess, B. (1973) The Use of Official Statistics in Sociology, Macmillan, London.
23. Lappé, M., Gustafson, J. M. & Roblin, R. (1972) 'Ethical and social issues in screening for genetic disease', New England Journal of Medicine, vol. 286, no. 21, pp. 1129-1132.
24. Lehman, H. & Huntsman, R. G. (1974) Man's Haemoglobins 2nd edn, J. P. Lippincott, Philadelphia.
25. Martin, P. (2005) 'The paradox of race/ethnicity', Critical Public Health, vol. 15, no. 1, pp. 77-78.
26. McKenzie, K. & Crowcroft, N. S. (1996) 'Describing race, ethnicity and culture in medical research', British Medical Journal, vol. 312, pp. 1054.
27. Modood, T., Beishon, S. & Virdee, S. (1994) Changing Ethnic Identities, Policy Studies Institute, London.
28. Nazroo, J. Y. (1999) 'The racialisation of inequalities in health', in Statistics in Society: The Arithmetic of Politics, eds D. Dorling & S. Simpson, Arnold, London, pp. 215-222.
29. NHS Sickle Cell and Thalassaemia Screening Programme for England (2004) Screening Policies. Available at: http://www.kcl-phs.org.uk/haemscreening/ (accessed 28 January 2004).
30. NHS Sickle Cell and Thalassaemia Screening Programme (2005a) Screening Algorithms and Risk Assessment, NHS Sickle Cell and Thalassaemia Screening Programme, London. Available at: http://www.kcl-phs.org.uk/haemscreening/ Lab_Policy.htm#AnAlgo (accessed 8 July 2005).
31. NHS Sickle Cell and Thalassaemia Screening Programme (2005b) Family Origins Questionnaire. Available at: http://www.kcl-phs.org.uk/haemscreening/ publications.htm#foq (accessed 11 July 2005).
32. Okamura, J. Y. (1981) 'Situational ethnicity', Ethnic and Racial Studies, vol. 5, no. 4, pp. 394-420.
33. Pringle, M. & Rothera, I. (1996) 'Practicality of recording patient ethnicity in general practice', British Medical Journal, vol. 107, pp. 1080-1082.
34. Sedgwick, J. & Streetly, A. (2001) A Survey of Haemoglobinopathy Screening Policy and Practice in England, NHS Sickle Cell/Thalassaemia Screening Programme, London. Available at: http://www.kcl-phs.org.uk/haemscreening/ publications.htm#EQUANS%20Review (accessed 5 November 2003).
35. Serjeant, G. R. & Serjeant, B. E. (2001) Sickle Cell Disease 3rd edn, Oxford University Press, Oxford.
36. Sheldon, T. & Parker, H. (1992) 'Race and ethnicity in health research', Journal of Public Health Medicine, vol. 14, no. 2, pp. 104-110.
37. Smart, A. (2005) 'Practical concerns that arise from using race/ethnicity as "the most reliable proxy available"', Critical Public Health, vol. 15, no. 1, pp. 75-76.
38. Streetly, A. (2000) 'A national screening policy for sickle cell disease and thalassaemia major for the United Kingdom. Questions are left after two evidence based reports', British Medical Journal, vol. 32, pp. 1353-1354.
39. Weatherall, D. J. & Clegg, J. B. (2001) The Thalassaemia Syndromes 4th edn, Blackwell Science, Oxford.
40. Zeuner, D., Ades, A. E., Karnon, J., Brown, J., Dezateux, C. & Anionwu, E. N. (1999) 'Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis', Health Technology Assessment, vol. 3, no. 11.