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Consumer Genetic Testing - DRAFT

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Position statement

The Royal College of General Practitioners (RCGP) and the British Society for Genetic Medicine (BSGM) recommend that health professionals should exercise caution when asked to offer, or provide, clinical expertise about the results of Direct to Consumer (DTC) genomic or genetic testing. Please see the full position statement for details.

Recommendations:

GPs should not take at face value, or attempt to interpret, reports from non-accredited and non-kite-marked laboratories such as DTC companies.
GPs should use clinical and family history to assess the chance of heritable disease.
Where a patient has a medical history or family history which suggests that genomic testing is indicated, then they should be referred via appropriate pathways regardless of their DTC test results.
If a patient who has had a DTC test is reported to have an alteration in a gene for which NHS testing is offered (e.g. BRCA) then you should discuss with your regional NHS genetics clinic whether referral is appropriate. Please note that majority of these results will be artefacts due to the technology used.
If a patient wants to discuss a DTC result for which NHS genomic testing is not usually offered (e.g. paternity tests or ancestry information) then they should be signposted to the commercial DTC provider. Such predictions rarely have health implications and therefore do not fall under the auspices of the NHS
We support educational campaigns (DH, HEE) informing patients of the limitations of DTC testing, and recommending that regulators should be asking that DTC testing companies provide clinical support as part of the models informing patients of the limitations of DTC testing.

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.