Ante-natal screening aims to identify genetic carriers of sickle cell/thalassaemia in order to provide prospective parents with “informed choice”. Since 2008 the NHS in England has used a Family Origins Questionnaire in connection with sickle cell/thalassaemia screening derived from our research programme.
The original policy issue concerned whether or not it is possible/desirable to target antenatal screening for sickle cell/thalassaemia by means of an ethnicity question. The policy problem was that socially constructed ethnicity categories correspond imperfectly to an unknown degree with actual prevalence of genetic carriers.
The screening question based on our research now guides the offer of initial screening and/or further laboratory tests for all pregnant mothers in England.
BOOK: Ethnicity and Screening for Sickle Cell/Thalassaemia
Dyson, S. (1999). Genetic screening and ethnic minorities. Critical Social Policy, 19(2), 195-215. https://doi.org/10.1177/026101839901900204
Dyson, S. M. (2002). Ethnic question & antenatal screening for sickle cell/thalassaemia [EQUANS]. Policy Briefing Paper, 5. ETHNIC_QUESTION_and_ANTENATAL_SCREENING
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 & medicine, 56(2), 285-297 https://doi.org/10.1016/S0277-9536(02)00027-8
Dyson, S. M., Culley, L., Gill, C., Hubbard, S., Kennefick, A., Morris, P., … & Squire, P. (2006). Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomised controlled trial of two questionnaires. Ethnicity and Health, 11(02), 169-189. https://doi.org/10.1080/13557850500460348
Dyson, S. M., Chambers, K., Gawler, S., Hubbard, S., Jivanji, V., Sutton, F., & Squire, P. (2007). Lessons for intermediate-and lowprevalence areas in England from the Ethnicity Questions and Antenatal Screening for sickle cell/thalassaemia (EQUANS) study. Diversity and Equality in Health and Care, 4(2).
Dyson, S. M., Cochran, F., Culley, L., Dyson, S. E., Kennefick, A., Kirkham, M., … & Squire, P. (2007). Ethnicity questions and antenatal screening for sickle cell/thalassaemia (EQUANS) in England: observation and interview study. Critical Public Health, 17(1), 31-43. https://doi.org/10.1080/09581590601045188