ALS Genetic Testing and Counseling

Used across the whole answer

✓Supports this

“Whether genetic testing and counselling are available, how they are paid for and how the process works differ from place to place.”

Says access to ALS genetic testing varies greatly within the United States and across the world, that access to genetic counsellors varies widely with where you live, and that what testing costs depends partly on which country you are in.

Access to genetic testing for ALS varies greatly within the US and across the world.

Where can I get tested?

✓Supports this

“Direct-to-consumer genetic tests are not designed for ALS/MND genetics and can be inaccurate or incomplete for that purpose.”

Says recreational tests such as AncestryDNA and 23andMe should not be used for ALS genetic testing, that they do not use the right testing, processing or results process for information this complex, and that they could give false reassurance.

These tests don't use the correct testing, processing, or results return process to manage complex information like genetic ALS/FTD testing.

Where can I get tested?

Used across the whole answer

iAdds context

“Legal protections around genetic information, including its use by insurers, differ a great deal between countries.”

Shows what one country's rules look like. In the United States, health insurers and most employers cannot use a positive genetic test against someone, but life, disability and long-term care insurers can, and employers with fewer than 15 staff sit outside the law.

Health insurance companies and most employers cannot discriminate against people who have tested positive, but life insurance, disability insurance, and long-term care insurance companies can decline services based on genetic status.

Genetic Discrimination

✓Supports this

“If a genetic change is found in you, relatives may carry the same change.”

Says a positive result in someone who has ALS has implications for their relatives, and that for most genetic forms of ALS children and siblings have a one in two chance of having inherited the same change.

For most genetic forms of ALS, this would mean that children and siblings have a 50% chance of inheriting the same variant.

Who could have genetic ALS?

Used across the whole answer

✓Supports this

“A genetic change is sometimes found in people with no family history, and sometimes no known cause is found in families where the condition recurs.”

Gives figures for both halves. A genetic cause is found about 10% of the time when there is no family history of ALS, frontotemporal dementia or related conditions, and about 70% of the time when there is a clear family history, which leaves roughly three in ten of those families with no cause found.

When a person has no family history of ALS, frontotemporal dementia (FTD), or related conditions, a genetic cause can be found about 10% of the time.

Genetic ALS

✓Supports this

“Most people with ALS/MND do not have an inherited form of the condition.”

Its own summary of the page states the same thing in plainer terms, and the page opens by saying the cause is unknown for most people diagnosed with ALS.

The majority of people diagnosed with ALS do not have a genetic form of ALS.

In Summary...

Used across the whole answer

Used across the whole answer

✓Supports this

“A genetic counsellor helps you weigh the decision and reach your own choice, including the choice not to test.”

Describes counsellors as guiding and supporting you from the very beginning of thinking about whether testing is right for you, and says plainly that you can speak to one and then decide against testing.

You can always speak with a genetic counselor to learn more and then decide that you don't want to test.

How can genetic counseling be helpful?

Used across the whole answer

✓Supports this

“For some people, a genetic test result is relevant to decisions about having children.”

Names reproductive planning as one of the reasons people test, because there are reproductive options that can avoid passing on a genetic change while still having a biologically related child.

Reproductive planning can be a motivation for testing because there are alternative reproductive methods that can help avoid passing down genetic risk while still having a biologically related child.

Testing considerations for people who are at risk

Further reading

Accessing genetic testing and counselling

Further reading

Family and personal implications of genetic testing

Further reading

Genetics and genetic testing in ALS/MND

Further reading

Questions to ask about genetic testing

Further reading

The role of genetic counselling

Further reading

Reasons people consider genetic testing