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When your genetics test results are ready someone from your healthcare team usually meets with you to give you your results. For example, a doctor, nurse or genetic counsellor - a specialist who can give you information about genetic testing and results.

This may be in person, by phone or an online meeting. You can talk to your healthcare team about what suits best.

They usually do this even if your test results show you do not have Lynch syndrome.

Genetic tests results take a few weeks. If there are any delays your healthcare team will contact you to let you know.

What your test results mean

Your Lynch syndrome test results will show if:

  • a gene change that causes Lynch syndrome was found
  • a gene change that causes Lynch syndrome was not found
  • another type of gene change was found
Gene change found for Lynch syndrome

If your result is "pathogenic variant or likely pathogenic variant identified" this means that you have a gene change that causes Lynch syndrome.

If this happens:

No gene change found

Your genetic test result may show that a gene change for Lynch syndrome was not found. What this result means for you and your family depends on the type of genetic test you had.

Genetic testing after a cancer tumour test

You may have a genetic test for Lynch syndrome after a cancer tumour test. If you have this type of test and no gene change has been found your results will say "no germline pathogenic variant identified". This means that no significant changes were found in the genes tested.

If you get this test result you likely do not have Lynch syndrome. But your healthcare team may recommend another test on your tumour sample, called a somatic test.

A somatic test is a genetic test that looks for gene changes in your tumour cells, that are not inherited. Your healthcare team will explain what the results mean.

Cascade testing because a family member has Lynch syndrome

You may have a genetic test for Lynch syndrome because a family member has Lynch syndrome. This is known as cascade testing. If you have this type of test and no gene change has been found your results may include the word "negative".

If you get this test result:

  • you do not have Lynch syndrome
  • even if some of your family members have a higher risk of getting certain cancers, you do not
  • you cannot pass Lynch syndrome on to your children because you do not have the gene change

We will offer you advice on how to reduce the risk of cancers that you have a family history of. You can also follow general advice on how to reduce your risk of cancer.

Gene change of uncertain significance

If you have a genetic test for Lynch syndrome after a cancer tumour test, your result could be "variant of uncertain significance (VUS) identified". This means that you have a gene change but it's not clear if it causes cancer or not.

If this happens:

  • we will ask you to contact your genetic counsellor or healthcare team to check if there any updates on this variant
  • your family members will not have genetic testing

We will offer you advice on how to reduce the risk of cancers that you have a family history of. You can also follow general advice on how to reduce your risk of cancer.

Test results and your family

You may have many questions about what the results mean for you and your family.

If you find out you have Lynch syndrome your healthcare team will encourage you to tell your family.

They will give you advice on how to do this.

They may share your test results with your family or other healthcare teams - but only if they have your consent. For example, it may help them understand if a family member is at risk of having Lynch syndrome.

How to tell your family, and other supports if you have Lynch syndrome

Talking to children about Lynch syndrome

Understanding your risk of specific cancers

The genes that can be affected in Lynch syndrome are:

  • MLH1
  • MSH2
  • MSH6
  • PMS2
  • EPCAM

A gene change in any of these can be linked to the increased risk of getting certain types of cancer. Ask your healthcare team to explain this to you. They can help you estimate your risk and give you advice on ways to reduce your risk of specific cancers.

Websites to help you check your risk include:

Insurance and Lynch syndrome

You do not have to tell insurance, pension or mortgage companies about:

  • tests for Lynch syndrome
  • a Lynch syndrome diagnosis

Under Irish law insurance companies cannot access or use your genetic data or genetic test results to decide premiums for:

  • insurance (life, health and income protection)
  • pensions
  • mortgages

Disability Act 2005, section 43 - irishstatutebook.ie

Your genetic test results are protected under the Insurance Ireland Data Protection Code of Practice.

If you are applying for new insurance the company may ask about medical history, family history, lifestyle factors, and any diagnoses, including genetic conditions. They use this to calculate your premium.

But you do not have to tell them you have a diagnosis of Lynch syndrome.

Page last reviewed: 18 March 2025
Next review due: 18 March 2028

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This project has received funding from the Government of Ireland’s Sláintecare Integration Fund 2019 under Grant Agreement Number 123.