Assessing the impact of Genetic Counselling on South Asian Families
Research type
Research Study
Full title
To assess the impact of Genetic Counselling on views around consanguinity and family planning in English speaking South Asians in the UK
IRAS ID
235756
Contact name
Nasaim Khan
Contact email
Sponsor organisation
Manchester University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Consanguineous marriage, or marriage of cousins occurs frequently within the South Asian population in the UK. Due to cousins sharing similar DNA, genetic diseases are more frequent among children in this population. Central Manchester University Hospitals NHS Trust runs a genetic service specifically aimed at families of South Asian origin. The service involves the use of genetic counsellors and genetic outreach workers to improve the clinical and educational engagement for this community.
The aims of this study are to identify the effect of Genetic Counselling on views around consanguinity and family planning and to compare the different attitudes between English speaking and non-English speaking UK South Asians. This will be done through semi-structured interviews with families of South Asian ethnicity. Ethical and HRA approval will be sought before starting the project.
Participants will be recruited via the Genetic Counsellor responsible for their care at the Regional Genetics Service at MFT. They will be approached by the genetic counsellor to take part in the research. Participants will be patients of South Asian ethnicity referred to the Clinical Genetics department at St Mary’s Hospital, Manchester University Hospitals NHS Foundation Trust (MFT). Patients will be aged over 18 years, have a child with an autosomal recessive disorder and be able to provide informed consent.
Data will be analysed using a thematic analysis approach, to identify various recurring themes across interviews.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
18/NW/0066
Date of REC Opinion
23 Feb 2018
REC opinion
Favourable Opinion