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East Genomics

Patient choice and consent

An appropriate discussion of genomic testing and the possible implications for a patient and their family members must take place before testing is requested.

This discussion must take place according to the Consent and Confidentiality in Genomic Medicine guidelines.

A record of this discussion must be retained within the patient record when a genomic test is ordered.

Training has been developed to support the Patient Choice Consent Framework, which is available online.

For Whole Genome Sequencing (WGS) tests, clinicians must complete this training prior to placing an order.

Record of discussion form - non WGS tests

For all genomic tests, a record of discussion must be retained within the patient record.

Whole Genome Sequencing (WGS) forms

For WGS the form below must be used and sent alongside the referral form.

Patient information has been created for those patient considering WGS. This can be found here.

The patient choice conversation can be performed remotely and the form submitted without a patient signature – please tick the 'Remote consent' section of the form to indicate this.

WGS consultee declaration form

If a person lacks capacity to make the decision about genomic testing, a relative, friend or advocate may need to be involved as a 'consultee'. A consultee is someone who will only consider the likely views and interests of the person who lacks capacity. They must set aside their own personal views about participating in research and consider the person they represent. A consultee cannot be part of the person’s NHS clinical team or anyone else acting in a professional or paid capacity (e.g. a person’s solicitor). The below form would need to be used in these instances.

If a person is between the age of 6 and 15, they will be need to be informed about their involvement in the National Genomic Research Library (NGRL) and asked to complete the below form.