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

Genetic testing is available to everyone with MND in the UK. A genetic cause can be identified in up to 20% of people with MND, even if they don’t have a family history of the condition. Anyone who receives a genetic diagnosis should get information about the possible implications for their family members and options for having children. Reproductive genetic testing is an option where you can prevent the transmission of inherited MND to your children. However, research has shown that people who may benefit from this may not be being referred to this service. Therefore, people may not be receiving key information on all their options 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, the researchers will undertake in depth interviews which would involve having a conversation with a researcher about your views and experiences.

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. 

Taking Part

What does taking part involve?

The study involves an interview about your views and experiences on genetic testing for MND, focusing particularly on reproductive genetic testing options. This would take around 60 minutes. 

With permission, the interviews will be audio recorded. The researchers will ask about topics such as your understanding of genetic testing, how you would feel about having reproductive testing and how you prefer to find out health related information. The interview could be performed by video call or in person.

Who can take part?
  • People with inherited MND
  • Relatives of people with inherited MND who are at-risk, including people who have had and not had predictive testing.

How can I take part?

For further information or to take part in the study, please contact: Shanice Allen at [email protected]

Study locations

UK-wide

Funding

This study is funded by MND Scotland