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

A record of this discussion must be retained within the patient record when a genomic test is ordered. 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 Record of Discussion form below must be used and sent alongside the referral form.

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.

The Record of Discussion form is now available in several languages including: Arabic, Chinese (simplified), Gujarati, Polish, Portuguese, Punjabi, Spanish, Urdu, Bengali and Welsh. These forms can be downloaded here.

Various patient information leaflets (for cancer and rare disease tests) have been created for patients considering WGS. These, as well as versions in several other languages, can be found here and should be given and/or discussed with the patient or their parent/carer.

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.