Young people's views about predictive genetic tests
Research type
Research Study
Full title
A qualitative study to explore the views of young people age 16-25 about predictive genetic tests for Familial Adenomatous Polyposis and Lynch Syndrome
IRAS ID
150332
Contact name
Tara Clancy
Contact email
Sponsor organisation
Central Manchester University Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 9 months, 30 days
Research summary
Familial Adenomatous Polyposis (FAP) and Lynch Syndrome (LS) are dominantly inherited conditions which predispose to a high risk of bowel cancer. At risk individuals can access a predictive genetic test (PGT) once a gene fault is identified in a family. The bowel cancer risk in FAP increases from the late teens and a PGT is offered around the age of 10. The bowel cancer risk in LS increases from the mid-20s and a PGT is offered from the age of 18. Regular screening by colonoscopy (a camera examination of the bowel) significantly reduces the risk of bowel cancer in both FAP and LS. Those who have not inherited the gene fault do not have to undergo this invasive procedure. PGT and bowel screening are associated with clear health benefits. But young people may also experience negative effects on their psychological wellbeing, family relationships and self-identity. These may differ depending on the young person’s culture and ethnic origin. We want to undertake semi-structured phone interviews with young people age 16-25 of White European or Asian origin who are known to the clinical genetics service in Manchester. We will talk to them about their views on PGTs. The interviews will be recorded (with consent) and transcribed. The transcripts will be analysed to identify the important issues. Our findings will inform clinical practice to help provide a service that best suits young people’s needs.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
14/SC/1417
Date of REC Opinion
3 Dec 2014
REC opinion
Further Information Favourable Opinion