Join Our Sounding Board
How To Get Involved
We recognise that the issues and factors surrounding genetics and genomics are complex.
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
We are looking to recruit individuals with a range of experiences (either personally or indirectly as a carer or family member) including:
- 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
How to Apply
- If you are interested in becoming a member of the GPW Sounding Board, please keep an eye on our social media channels.
- We typically aim to recruit a new cohort before May ready for our summer consultation which normally takes place in July.