Acceptability of preimplantation genetic testing in Lynch syndrome
Research type
Research Study
Full title
Awareness and acceptability of pre-implantation genetic testing (PGT) in women with Lynch syndrome
IRAS ID
354480
Contact name
Emma Crosbie
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Pre-implantation genetic testing for monogenic disorders (PGT-M) is a fertility treatment used to reduce the chance of individuals with inherited diseases passing it on to their children. Since 2006, PGT-M has been available for Lynch syndrome, a condition that increases the risk of cancers particularly, endometrial and colorectal cancer. However, fewer people with Lynch syndrome use PGT-M compared to those with other inherited cancer risks, like hereditary breast and ovarian cancer (HBOC). The reasons for this are not well understood.
Our study aims to undertake an online questionnaire and virtual semi-structured interview to understand the knowledge and awareness of PGT-M amongst women with Lynch syndrome. The study will be over a period of a year. All women with Lynch syndrome who are over 18 years will have the opportunity to join the study. The information that we acquire from the study will help improve education and counselling so that women can make informed decisions about their reproductive choices.
Deciding whether to use PGT-M is complex and influenced by moral, ethical, social, and financial factors. The interviews will help to understand decision-making and challenges women face in accessing PGT-M. Understanding these barriers will help us better support women dealing with this difficult decision.
There is very little research on PGT-M awareness and acceptance in women with Lynch syndrome. Our study will help fill this gap and improve resources for those considering PGT-M.REC name
South Central - Hampshire B Research Ethics Committee
REC reference
25/SC/0174
Date of REC Opinion
10 Jul 2025
REC opinion
Further Information Favourable Opinion