Therapies and allied health
Genetic counsellor
Helps you decide whether to have genetic testing, and helps you think through what a result would mean for your family.
A genetic counsellor's job is not to persuade you to test. It is to make sure that if you do, you already understand what each possible result would mean, for you and for relatives who may then face the same decision. They also help with how and when to tell family, which is often the harder part.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Explaining what genetic testing in ALS/MND can and cannot tell you
- Working through what a positive, negative or uncertain result would mean
- The implications for children, siblings and other relatives
- How and when to tell family members, and who has to know
- Insurance, employment and privacy consequences, which differ sharply by country
- Access to gene-specific treatments and trials where a result would change eligibility
When you might meet them
- Before testing, not after. This is the point of the role
- When there is a family history of ALS/MND or frontotemporal dementia
- When a treatment or trial requires a known genetic result
- When a relative is deciding whether to be tested
Things you could ask about
- What would each possible result actually change for me?
- Who else in my family would this information affect?
- Can I decide later, and is there a reason to decide now?
- What are the insurance or employment consequences of testing where I live?