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LIVING WITH SICKLE CELL OR BETA THALASSAEMIA TRAIT: IMPLICATIONS FOR IDENTITY AND SOCIAL LIFE

Start date: 01 January 2012

End date: 31 December 2013

Government coordinated screening strategies for sickle cell and thalassaemia disorders are identifying more trait carriers than ever before.There remains, however, a dearth of research on the social consequences of being a ‘healthy’ trait carrier, particularly at different stages of the life course. Little is also known about how carrying a trait impacts on people’s ideas about health and illness, or the extent to which they see genetic knowledge as a personal or collective resource.

The primary aim of this two year qualitative study is to understand how individuals make sense of carrying a genetic trait for two recessive disorders - sickle cell and thalassaemia - within the context of their family and broader social relationships.

The research includes in-depth interviews with 50 sickle cell (n=20) and thalassaemia (n=30) carriers, divided equally between men and women; from a diverse range of ethnic, cultural and faith backgrounds.The sample will also include a broad range of ages and different family relationships.

The research will contribute to theoretical debates, as well as policy and practice, including providing information to the at-risk communities, in way that facilitates more general empowerment.