16th July 2021
The AGNC welcome recommendations from the House of Commons Science and Technology Committee report on Direct to Consumer Genomic Testing. In particular the following points are of importance for the genetic counselling profession.
We are pleased to note a recommendation for the constant review of any direct to consumer test introduced to the market; to ensure that it is safe, clinically useful, provided with clear, current and accurate information, and that appropriate support is included as part of the product. We hope that regulation will prevent patients from receiving results that are misleading or unnecessarily confusing, and that when clinically relevant findings are reported the patient has appropriate support and guidance from the provider, with referral on to genetics services for additional support when appropriate.
The acknowledgement that this additional support may impact NHS services has previously been highlighted by the committee and we wholly support a thorough review of the impact of direct to consumer tests on NHS services; including clinical genetics and genomic counselling teams, which are overstretched nationally, with a shortage of genetic counsellors. Any redress of the extra burden on our genetic services through workforce and training support would be welcome.
The Science and technology Committee report can be viewed here: https://committees.parliament.uk/work/263/commercial-genomics/publications/reports-responses/
The AGNC has released direct to consumer testing advice for patients and for genetic counsellors: https://www.agnc.org.uk/info-education/documents-websites