Understanding Reproductive Choices: Research Study Participants Needed
- Team.Lynch.Syndrome.UK LSUK
- Oct 22
- 2 min read
Exploring awareness and experiences of pre-implantation genetic testing (PGT) among women with Lynch syndrome
Many people in the Lynch community ask questions about family planning and what options are available to reduce the chance of passing the condition on to their children. One of those options is pre-implantation genetic testing (PGT), a fertility treatment that allows embryos created through IVF to be tested for inherited conditions such as Lynch syndrome before pregnancy.
Researchers from the University of Manchester are running a new study to understand how women with Lynch syndrome learn about, feel about and make decisions around PGT. The study aims to identify what kind of information, support and counselling would best help people make informed reproductive choices.
What the research involves
The study is being led by Professor Emma Crosbie and Dr Jean-Ellen Johnson from the University of Manchester’s Division of Cancer Sciences.
They are inviting women aged 18 and over with a confirmed diagnosis of Lynch syndrome to take part in a short anonymous online questionnaire. The questionnaire asks about medical background, awareness of PGT and views or experiences of using it. It takes around 15 minutes to complete and does not collect names or IP addresses.
At the end of the questionnaire, participants can choose whether they would like to be contacted for a follow-up interview to discuss their views in more depth. Interviews will be held online (via Microsoft Teams), last around 30–60 minutes, and be audio-recorded. Taking part in an interview is entirely optional.
Why this research matters
Although PGT has been available to people with Lynch syndrome for some time, its uptake appears lower than for other genetic conditions. By understanding how women approach these decisions, including conversations with healthcare professionals and how a Lynch diagnosis may influence family-building plans, the researchers hope to improve the guidance, education and counselling available to those considering their options.
The findings will be published in scientific journals and presented at academic conferences, but individual participants will not be identifiable. Anyone who takes part can ask to receive a summary of the study results once available.
Safeguards, ethics and confidentiality
This research has been independently reviewed and approved by the South Central – Hampshire B Research Ethics Committee. All information collected through the questionnaire is anonymous and securely stored on University of Manchester systems.
Things to consider
This research touches on personal and sometimes sensitive issues around fertility and family planning. Please take time to decide whether participation feels right for you at this moment. If these topics raise difficult emotions, you may wish to talk with a trusted friend, family member, counsellor, or your healthcare team.
Interested in taking part?
If you would like to take part, or have questions about the study, please contact Dr Jean-Ellen Johnson at jean-ellen.johnson@mft.nhs.uk. Alternatively, to take part right away, please follow the link below to access the online questionnaire:
Lynch Syndrome UK is pleased to support this research, which aims to deepen understanding of reproductive options and inform the compassionate, evidence-based care that our community deserves.
