FAQ's

For Patients and Public:

How do I get a genetic test done on the NHS?

You will need to be referred by your GP or the clinical professional that is treating you to your local Regional Genetics Centre (RGC).

Why are not all test services provided by a member laboratory listed on the UKGTN online database of tests?

UKGTN lists test services that member laboratories have submitted to UKGTN for genetic test evaluation for UK wide service. 

Is a test for x condition available on the NHS?

In the first instance, search the UKGTN database for tests that have been evaluated by the UKGTN.  If no results, please check other databases for tests that are offered through UK, European and US  laboratories. Link to other databases. 

I want to have a test done privately-how can I arrange this?

You would need to discuss directly with a clinical service your options for arranging private healthcare.

I want to order a genetic test Over-The-Counter (OTC) or through the internet?

UKGTN is unable to make recommendations on any private companies that offer testing as we are an NHS organisation.  To help you when considering genetic testing from private companies, UKGTN would suggest you read this article published by the Human Genetics Commission.

How to access genetic testing in the UK if you are overseas?

A clinical professional in your country would need to contact a UKGTN laboratory directly to discuss arrangements for overseas referrals including price and requirement for sending a sample.

Why doesn't UKGTN list patient support groups on its website?

There are umbrella organisations that UKGTN lists that have established processes in place to help their member charities offer reliable information and support for patients, carers and members of the public. This is a more appropriate route than UKGTN trying to list all of the available support groups.

Test Services:

Why are gene dossiers not available for all the test services listed in UKGTN?

Gene dossiers are available for test services introduced since 2005 (approved 2004). See the answer below for Grandfathered tests.

Why is a gene dossier available for a test service but not testing criteria?

Testing criteria were introduced later than gene dossiers in 2005 for new tests introduced for service in 2006. Gene dossiers approved before this date do not have testing criteria.

Can I send samples or arrange testing through contacting the UKGTN administrative office?

No, the UKGTN administration office can advise what tests are available (basically the same information which is available on this website) but you will need to contact the laboratory directly to arrange testing and send samples.

What is a Grandfather test?

Grandfathered tests are mainly those which were well established in the laboratories before UKGTN was formed. They are the first genetic tests that were added to the NHS Directory of Genetic Testing when the molecular laboratories joined UKGTN in 2002 and before gene dossiers were introduced. 

Laboratory Membership:

How can my laboratory become a member?

The UKGTN application procedure and forms are available for download from the library area of the website.

Media:

Does UKGTN have a press office?

UKGTN does not have a press office and requests that media enquiries are directed to the team by e-mail.

Lab Admin:

Our lab test service information needs updating-how do I do this?

Ask the head of your laboratory service to sign you up with an account. Instructions for updating your information will be provided.