Contact

Send us your feedback

Thank you for your feedback. An email has been sent to the ESRC support team.

An error occured whilst sending your feedback. Please review the problems below.

Our Research Catalogue contains grants and outputs data up to the end of April 2014. Records will no longer be updated after this date.

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

  • Start date: 01 January 2012
  • End date: 30 June 2014

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.