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An introduction is presented for this issue which focuses on haemoglobin disorders sickel cell and thalassaemia and mentions several article authors including ethnographic researcher Carolyn Rouse, sociologist Kate Reed, and sociologist Ruha Benjamin.

Objective. To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana. Design. Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD. Results. Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence. Conclusion. Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair. [ABSTRACT FROM AUTHOR]

Concepts allied to ethnicity are increasingly coming under question as legitimate variables for use in health research. A randomised controlled trial of two ethnicity screening questions for ascertaining risk of carrying genes associated with sickle cell and thalassaemia illustrates the challenges and limitations of assessing an association of social constructs and genetic statuses. Objectives . To evaluate two candidate ethnicity screening questions in antenatal screening programmes in low, mixed and high sickle cell prevalence areas, and to identify time taken in administration of the questions by use of the following measures: Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview. Numbers of carriers of clinically significant haemoglobin disorders missed by ethnicity screening questions. Time taken to explain screening question for sickle cell disease (SCD)/thalassaemia and obtain ethnic/family origins. Proportion of clients providing usable ethnic/family origins data. Reported ethnic/family origins in pregnant women at first booking with midwife. Design . Ten-month (September 2002–June 2003) questionnaire study with random allocation to two self-administered ethnicity questions, comparison with laboratory results and results from re-interview. The settings were antenatal booking clinics in four geographical areas of England of varying expected foetal prevalence of SCD: very high (29.75 per 10,000 pregnancies); high (8.2); mixed high and low (1.29); and low (0.18). The subjects were 4,559 pregnant women at first booking with midwife. Results . Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview were 4.33% (CI 2.63–6.68%) for a category-based question and 9.45% (CI 6.86–12.61%) for a binary plus open-ended question. Proportions of carriers missed were 5.74% (CI 2.34–11.46%) and 9.71% (CI 4.75–17.13%) by category-based and binary plus open-ended questions, respectively. Average time taken to ascertain ethnic/family origins for screening was between 2.17 and 5.12 minutes in different areas, and up to 15 minutes at the 95th centile. Usable ethnicity screening data was missing in 2.94% of instances. Errors in interpretation or missing data were 3.2% for a category-based question and 4.71% for a binary plus open-ended ethnicity question. Ethnicity Question A produces fewer cases of missing or misinterpreted data (p < 0.001) 10.1080/13557850500460348 X25233W81G641Q7P 169 189 Routledge, part of the Taylor & Francis Group CETH Ethnicity and Health 1355-7858 http://taylorandfrancis.metapress.com/link.asp?target=journal&id=102212 11 2 Number 2/May 2006 X25233W81G641Q7P.pdf http://taylorandfrancis.metapress.com/link.asp?target=contribution&id=X25233W81G641Q7P http://taylorandfrancis.metapress.com/link.asp?target=issue&id=M4567VT81122 Simon Dyson Lorraine Culley Cynthia Gill Stephanie Hubbard Ann Kennefick Patsy Morris David Rees Faye Sutton Patricia Squire Ethnicity Sickle Cell Thalassaemia Screening [ABSTRACT FROM AUTHOR]