Understanding the impact of sickle cell trait
Research type
Research Study
Full title
Children’s understanding of and adaptation to carrier risk for Sickle Cell Diseases
IRAS ID
121526
Contact name
Melissa Noke
Contact email
Sponsor organisation
The University of Manchester
Research summary
Newborn screening was introduced nationally from 2007. As well as identifying children who have sickle cell disease from birth, the programme identifies some children incidentally who are carriers of some of the sickle cell disease haemoglobin variants. Although carrier identification is not the main aim of newborn screening, once carriers have been identified, it is believed to be unethical to withhold information from parents. The incidental identification of newborns contradicts guidelines produced by international organisations who believe that children should not be provided with carrier information, principally due to a proposed negative impact upon a child’s developmental wellbeing. Although many organisations recognise that identifying children during their childhood may negatively impact upon them, there is little concrete evidence supporting this claim. Research has typically used quantitative methods which have failed to find significant results and it is not clear from this research what impact, if any, childhood carrier identification has on children. This study aims to explore children’s experiences of having testing for sickle cell carrier status and investigate whether having awareness of carrier status or at risk status impacts upon children. This study will explore children’s experiences through qualitative write and draw interviews. Previous research has shown that current quantitative measures do not reflect children’s experiences of being identified as a carrier or of having knowledge of their at risk status. As such, this study will also seek to explore children’s experiences of completing these questionnaires and also provide some insight into how reflective these questionnaires are of children’s experiences.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
13/NW/0231
Date of REC Opinion
23 May 2013
REC opinion
Further Information Favourable Opinion