Living with sickle cell or beta thalassaemia trait: Implications for identity and social life

This study is a two year qualitative project carried out in collaboration with local and national voluntary sector organisations, to understand the long term social implications of being identified as a ‘healthy carrier’ of sickle cell or thalassaemia trait, the two most common recessive gene disorders affecting people living in the UK. We are carrying out biographical interviews with 50 men and women from different and plural ethnic backgrounds, at different stages of their life-course, to understand how they make sense of being a carrier, their concerns and engagement with this liminal status that may never have/had any impact on their health but can have serious health consequences for a potential child, in case their partner happens/happened to be a carrier as well. We will also carry out focus group discussions with family members who know someone with a trait in the extended family, and health and social care professionals, about their ideas and responses to someone with a trait and the different interventions envisaged within the NHS Sickle cell and thalassaemia screening programme. 

The NHS coordinated antenatal and neonatal screening programme for sickle cell and thalassaemia disorders is identifying an increasing number of trait carriers every year. Current estimates suggest that there are 240,000 sickle cell trait carriers (more predominant among people of African and African-Caribbean origins) and 214,000 carriers of thalassaemia trait (more common in people of Greek, Turkish, Cypriotic and South and East Asian origins). Both conditions are located in different local, national and global histories and political rhetoric of ‘informed choice’ and support underpinning public health interventions. With shifts in family formation and plural identities located transnationally, ‘ethnic origin’ can no longer be treated as a reliable predictor of who might carry a particular trait. The destabilisation of a bureaucratic notion of ethnicity is of particular interest to us in understanding the social consequences of being a 'healthy' trait carrier. We know little, for example, about how carrying a trait impacts on people's ideas about health and illness or, more broadly, their social identity and family relationships. Using insights from the social science literature on new genetics and risk, the screening policies appear as an important discursive site to analyse the rhetoric of reproductive choice and how people identified as being carrier negotiate a biographical territory of relationships threatened by ‘colonisation of future’ in Giddens’ terms.

Funding

Funder(s): ESRC 
Start Date: 01-Dec-2012
Expiry Date: 31-Dec-2013

Members

Internal staff

External Collaborators

  • Waqar Ahmad
  • Elizabeth Anionwu
  • Simon Dyson  

Public Health and Society Research in the Department of Health Sciences