Join Our Sounding Board

How To Get Involved

We are committed to working with patients and members of the public, to explain things in a clear and simple way, empowering the citizens of Wales to understand more about what genomics can mean for them.

We recruit a new cohort to join this Patient and Public Sounding Board to expand the current membership annually:

Anyone with a range of experiences (either personally or indirectly as a carer or family member) can apply, this can include:

  • Inherited cancers such as inherited breast, prostate, bowel or ovarian cancer
  • Rare diseases such as Cystic Fibrosis, Huntington’s Disease, Tuberous Sclerosis
  • Developmental Delay Disorders such as Autistic Spectrum Disorders, Fragile X, Down’s Syndrome
  • Being offered genetic testing as prediction of disease, or during pregnancy
  • Participation in a precision or ‘personalised’ medicine trial, e.g. for cancer
  • Any interaction with the All Wales Medical Genomics Service

The current Sounding Board have been consulted on a number of topics to date including:

  • Options for taking patient consent to use their genomic data / samples for research
  • Designing a good website with the most suitable layout, content and functionality
  • Ways to improve clinic and waiting areas in the genomics service
  • Design and access considerations from a patient and public perspective for a proposed new location for genomics services
  • Content of information leaflets and other supporting material for appointments
  • Specific considerations for patients when introducing some new genomics services
  • How other related programmes can introduce patient and public involvement in their work
  • Content and approach for a large conference promoting all aspects of genomics

This group will continue to work with other members of Genomics Partnership Wales to:

  • Help us with communication materials for patients/public
  • Help us to improve patient/public awareness of genetic testing and genomics
  • Help us to improve our informed consent processes and patient information sheets
  • Help us to shape our approach to sample and data sharing for the benefit of research and clinical care
  • Help us to shape our approach to providing genomics services to our patients
  • Help ensure that patients and their families remain at the heart of our work