Genetic counselling and patient responsibilities

What’s the study about?

If you’ve had genetic testing and discovered that you have a genetic condition, you may feel like you have a responsibility to act in a certain way following your results. This can inclusing decisions about sharing information with family members, family planning, and making personal choices about treatment or lifestyle.

This study wants to understand how being diagnosed during genetic counselling has changed how you feel about these perceived responsibilities. And, the researchers want to find out if people feel supported in this. The findings may be used to influence how genetic services support people after being diagnosed with a genetic condition. 

What are the criteria for taking part?

People who:

• Are over 18 
• Have received genetic counselling from a GCRB registered genetic counsellor. Or, from someone who is training to be a certified genetic counsellor.
• Have received a genetic diagnosis over one month before the interview.
• Have a variant that causes hereditary breast cancer (like BRCA1/2), or other genetic conditions.

Why do you want me to be invovled? 

By sharing your experiences, you can help researchers understand how genetic counselling can affect how people feel about making decisions. Through this, you'll enable them to look at ways to support people who may struggle with their diagnosis and making decisions. 

What do I need to do?

You'll be interviewed online by a student interviewer for around 40 to 60 minutes. In this interview, you’ll be asked your feelings and opinions about any responsibility you felt after receiving a genetic diagnosis and how well you were supported.