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Many submissions to this inquiry expressed concern that direct-to-consumer genomic testing could increase pressure on...

Recommendation
Many submissions to this inquiry expressed concern that direct-to-consumer genomic testing could increase pressure on the NHS due to consumers consulting their GP following a test result. Although there is not yet strong evidence of this happening, some companies providing tests directly to consumers recommend that their customers consult genetic counsellors before and after using their products, and the previous Government acknowledged the likelihood of such customers consulting NHS specialists or GPs. The Government should gather evidence on the current impact of direct-to-consumer genomic testing on the NHS, as well as the effectiveness of guidance and other support offered to NHS professionals encountering patients who have used such tests. If necessary, the Government should support the Royal Colleges and other relevant organisations to publish guidance for NHS professionals, as well as for consumers consulting the NHS following a direct-to- consumer genomic test, explaining the capabilities and limitations of those tests, how the NHS will act on results obtained from such tests and the reasons for the actions that the NHS will and will not take.
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Government Response
Acknowledged
HM Government Acknowledged
The Government agrees that it is important to gather more information on the impact of DTC genomic testing in the NHS. An NHS Genomics Workforce Survey, aimed at doctors initially, was launched on the 23 August 2021 across the NHS in England. It includes a question to quantify the proportion of doctors who have encountered patients seeking advice after taking a DTC genomic test, and whether doctors believe this will impact their future practice. This question will also be included in other versions of the survey that will be aimed at other healthcare professionals, for example, a survey aimed at pharmacists will be launched early next year. The Government also agrees that it is important that NHS professionals are well supported with guidance on DTC genomic testing. The British Society for Genetic Medicine (BSGM) and Royal College of General Practitioners (RCGP) have published a position and guidance statement on DTC genomic testing, issued in 2019 (https://www.rcgp.org. uk/policy/rcgp-policy-areas/genomic-position-statement.aspx). The NHS England and NHS Improvement Genomics Clinical Reference Group, which advises on clinical policy and strategy for genomics in the NHS, have considered and endorsed this guidance and continue to consider implications of DTC genomic testing on the NHS. This guidance notes that NHS patients may present to their GP or other NHS professionals requesting help with the interpretation of DTC genomic results and sets out recommendations on how NHS professionals should approach the management of these patients. It explains that the analytical validity, sensitivity, and clinical utility of DTC genomic testing may be lower than NHS standards and, for certain types of DTC genomic test results, there is a high chance of false positive or false negative results. This means that patients should be offered the NHS care which would otherwise have been offered (for example, family history and risk assessment, healthy lifestyle advice, or referral to specialist care) regardless of their DTC result. Furthermore, the Health Education England Genomics Education Programme (HEE GEP) will work with the Academy of Medical Royal Colleges, NHS England and NHS Improvement, and Government to build on this existing guidance. The HEE GEP is already working with the Royal College of GPs to develop resources to support GPs in understanding DTC genomic test results, managing conversations with patients who have taken such tests and managing required NHS care as appropriate, whilst adhering to the 2019 RCGP guidance outlined above. The HEE GEP will also explore the resources required to support other NHS professionals, such as nurses and midwives, encountering patients who have used DTC genomic tests. Resources and learning interventions will be evaluated by the HEE GEP to provide evidence of usage and impact.
Addressee Bodies
Department for Science, Innovation and Technology
Timeline
Recommendation age 4.9 yrs
Report published 22 Jun 2021