What if I’ve had tests outside the NHS?

Information about direct to consumer genomic tests.

What if I’ve had tests outside the NHS?

Direct to consumer (DTC) genomic tests include tests that:

  • Provide information about your ancestry. This is done by looking at markers in your genetic code that give clues about roughly where your family originated.
  • Provide information about health risks. These tests predict the chance of developing certain conditions such as heart disease, dementia and breast cancer

Can the NHS use DTC test results?

NHS services cannot interpret any raw data or results obtained from a DTC genetic test. If you are concerned about your family history of disease (including cancer), or feel you might have a genetic condition, please discuss this with your GP who can refer you to your local Clinical Genetics service if appropriate.

NHS Genetic TestDTC Genetic Test
Aimed at making a diagnosis.Aimed at giving information about health risks, but not for making a diagnosis.
Genetic testing is directed at your specific condition or health problems as assessed by a healthcare professional. Your medical history, family history and lifestyle factors are a key part of choosing the right test for you.DTC genetic tests are not specific to you and so don’t take account of your medical history, family history or other lifestyle factors.
Pre-test and post-test genetic counselling is routinely available to help you understand your genetic test and any result.Genetic counselling is usually not available to help you understand your genetic test or any result.
Genetic testing is targeted to look in detail at the part of your genetic code that’s relevant to your specific condition or health problems. Any genetic result is carefully interpreted, taking into account your personal medical history.Most DTC tests do not look at the genetic code in detail. These tests looks for certain differences in the genetic code called Single Nucleotide Polymorphism, or SNPs. Some research has shown that certain combinations of SNPs are associated with a higher chance of developing some health conditions.
Genetic testing takes place in an NHS accredited laboratory.Genetic testing does not take place in an NHS accredited laboratory.

When it comes to DTC genetic tests, it is important that you know exactly what the test you are buying involves as these results could have significant implications for you or other members of your family.

If you choose to have a DTC genetic test, you should make sure that you understand what the company will do with your data. Some companies might store, sell or conduct research on your genetic data.

More information can be found on the Genetic Alliance website and the Association of Genetic Nurses and Counsellors website.

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