Join Our Sounding Board
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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