Ethnicity and Screening for Sickle Cell/Thalassaemia: Lessons for Practice from the Voices of Experience

Screening policies for sickle cell and thalassaemia have only recently been formalized in the UK. This book asks what types of ethnicity information are relevant for health professionals to ask as part of this screening and why. Through extensive use of interview material, the book draws upon the experiences of sickle cell and thalassaemia counsellors who have been at the forefront of understanding in this area. The book:

• Demonstrates how best practice for screening in a multi-ethnic society requires us to better understand the myth of ‘races’, the meanings of concepts such as ethnicity and racialization, and the relation of racism to issues of citizenship, immigration, asylum and nationality.
• Shows how learning from best practice for screening could be a model for developing cultural competency across all types of health care provision.
• Clarifies, through the use of the biologically-grounded exemplar of sickle cell and thalassaemia, debates of ‘race’ and ethnicity for those working in social sciences.
• Listens to the voices of experience and validates the hitherto unacknowledged achievements of professional women from minoritized ethnic groups.
Extensive direct quotations from experienced sickle cell and thalassemia counsellors


Explanations of key concepts, such as 'race', ethnicity and racism


Explanation of the political, social and historical factors underlying tensions in asking an ethnicity questions


Further resources and website information

Simon Dyson, BSc(Soc), MPhil, PhD, Reader in Applied Social Sciences, Unit for the Social Study of Thalassaemia & Sickle Cell, De Montfort University, Leicester, UK