Reproductive medicine options and family planning for people living with and at risk of inherited MND

An interview study to explore the attitudes of people with genetic/inherited MND and family members of people with inherited MND towards reproductive options

Around 10-20% of people with MND have an inherited or genetic form of MND. For some people in this situation, and their relatives, this can impact their views and decisions around having a family. Reproductive genetic testing is a type of genetic testing for people who wish to avoid passing on the gene change linked to MND to their future child. However, not everyone is given information about these options and has the chance to make an informed choice that is right for them. Also, there has been little research into the views, experiences and information and support needs of families affected by MND when making choices around having a family.

The researchers would like to explore the attitudes of people who have inherited MND, and family members of people with inherited MND, towards reproductive options. To do this, they are inviting people to take part in an interview. This would involve having a conversation with a researcher about your views and experiences around having a family. They would like to talk to people with different experiences - this may include people who have had a family naturally without any extra testing, and people who have used, or thought about using, reproductive genetic testing options like prenatal testing (PNT) and pre-implantation genetic testing (PGT). You don't have to have heard of reproductive testing prior to the interview.

How will this study help people with and affected by MND now and/or in the future?

This project aims to inform guidelines for reproductive genetic counselling in MND, improve accessibility to this service, and to make sure people have access to important information and support when making decisions around having a family.