Developing the NHS England Genomics Programme strategy

Closed 12 Sep 2022

Opened 26 Aug 2022

Overview

Genetics is the study of genes and their roles in inheritance – in other words, the way that certain traits or conditions are passed down from one generation to the next. In healthcare, genetics has typically focused on variations in a single gene when determining the cause of a health condition.

Genomics is an all-encompassing term that takes into account all the DNA in a person's or organism's genome – both the genes that code for proteins and the non-coding regions. It looks at how genes are expressed and the interplay between different genes.

The NHS Genomic Medicine Service (GMS) works to bring the benefits of genomics to patients in the NHS. The NHS GMS consists of:  

  • a national genomic laboratory network made up of seven NHS genomic laboratory hubs (GLHs) that perform genomics testing, analysis, and interpretation of the results
  • a National genomic test directory that lists the tests that the NHS GMS offers
  • an integrated Clinical Genetics Service that provides care for people and families affected by, or at risk of having a genetic condition
  • the NHS GMS Research Collaborative to support the advancement of genomic research
  • a national network of seven NHS GMS alliances, to support equity of access and systematic embedding of genomics in end to end clinical pathways.

The NHS Genomics Programme is developing a strategy which will set out the priorities for the NHS GMS over the next 3 to 5 years and we’d like your input on what these priorities should be. 

Throughout April and May 2022, the NHS Genomics Programme hosted a series of workshops with stakeholders to discuss the future priorities for the NHS GMS. The outputs of these workshops have been used to inform the questions outlined in this survey. 

This survey is designed to capture views from stakeholders and does not represent the views of NHS England. While outcomes of this survey will inform the development of the NHS genomics strategy, the final strategy will take into consideration funding and resourcing available to ensure the strategy is achievable.

This survey has eight sections and it should take about 30 minutes to complete, though it could take a bit longer. 

  1. About you
  2. Developing the vision for the NHS Genomic Medicine Service
  3. Delivering the best experience for patients, their families and the public
  4. Promoting equality, diversity, and inclusion 
  5. Expanding diagnosis and precision medicine
  6. Developing the genomic testing strategy
  7. Embedding research and innovation
  8. Expanding genomics into mainstream services (services which are not specialist genomics services)

While we would encourage you to answer as many questions as you can, there may be some technical questions that you do not feel you can answer. If this is the case please leave blank or select "I don't know". If you do not want to answer all of the question, please navigate to questions that are of most interest to you. Thank you for taking the time to complete this survey.

What happens next

The results of this survey will feed into the development of the NHS genomics strategy over the summer, ahead of it being published in late 2022. If you have any questions or further comments at this stage, please contact england.genomics@nhs.net

Audiences

  • Foundation trusts
  • Charities
  • Patients
  • Carers
  • Service users

Interests

  • Reducing health inequalities
  • Specialised commissioning
  • Public