Obtaining Consent for Rare Disease Tests

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It is important that individuals undergoing genomic testing or their representatives understand that  these tests may not always identify a cause for a health problem and have potential to provide a result which is uncertain (variant of unknown significance, VUS ) or an additional/incidental finding which is unrelated to the patient’s current presentation. Health Education England have produced a training package for obtaining consent for genomic tests. It is available here.

The standard NW GLH Genomic test consent form can be found below:

NW GLH Genomic test consent form