Genomics, the study of our DNA, is helping to shape the future of health care
Do you or a loved one have lived experience of inherited conditions or genetic testing?
Be part of a community that’s helping to improve these experiences in future.
Genomics Partnership Wales are seeking interest from individuals to join their Patient and Public Sounding Board in 2025!
This is an exciting opportunity for a range of individuals to join the conversation on the future of genomics in Wales. They 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.
What do participants need to do?
- Attend four quarterly meetings throughout the year
- Meeting preparation – GPW will send any documents and materials at least one week in advance so that participants can read and digest them ahead of time. They do not expect preparation to take any more than two hours per meeting.
- Email consultations/specific consultations – as required. The number and type of email consultations vary and will not require a lot of reading. There may also be the opportunity to attend additional meetings on specific topics.
- Attend a one-day induction and training session held virtually on Tuesday, 2nd July 2025, before the first consultation meeting held virtually on Wednesday, 3rd July 2025.
The length of term as a Sounding Board member is two years.
How long will it take? Meetings will last around six hours, including regular breaks.
Will participants get paid? An honorarium payment is available to cover the time required to prepare for and attend consultation sessions. For face-to-face meetings, all reasonable travel, accommodation, catering, and participation costs will be met by Genomics Partnership Wales as per their policy, which reflects guidelines produced by Health and Care Research Wales for similar patient and public involvement activity. Accommodation and catering will be arranged if required.
Is this for research, policy or services? All three depending on the topics being covered during the meetings.
Who can take part? This opportunity is open to members of the public from across Wales.
They are looking for people (either personally or as a carer or family member) who have experience with any of the following:
- Inherited cancers such as inherited breast, prostate, bowel, or ovarian cancer.
- Rare conditions with a genetic component (e.g., Cystic Fibrosis, Huntington’s Disease, Tuberous Sclerosis, Sickle Cell Anaemia).
- Developmental Delay Disorders such as Autistic Spectrum Disorders, Fragile X, Down’s Syndrome.
- Received/been offered genetic testing for diagnosis, treatment, or during pregnancy.
- Participation in a precision or ‘personalised’ medicine trial, e.g., for cancer.
- Any interaction with the All Wales Medical Genomics Service.
And: - Are able to voice opinions in a constructive manner, in a group environment.
- Can explain clearly why certain communications may generate emotions, confusion, or uncertainty.
- Are able to listen to other perspectives and respect other viewpoints.
- Understand that Genomics Partnership Wales will use the collective insight gained to improve and shape our work but may not be able to action each individual suggestion that you put forward.
You do not require: - Specific scientific or research experience; recruitment will be based on personal experience, so we are not seeking professional perspectives.
- Public speaking experience or media training.
- Medical or scientific knowledge related to genomics – you will be provided with all the information you need during the induction process.
Deadline: 31 May 2025
Location: Meetings will be held virtually; however, they also hold one meeting a year that includes both virtual and optional face-to-face aspects- in Cardiff, Swansea, or mid/north Wales.
Additional Information:
Expressions of interest are welcome from individuals who:
- Have personal (or care for someone who has) experience of genetic testing / genomics / precision medicine / clinical trials / inherited cancer / rare diseases / developmental delay disorders
- Have good communication skills
- Can represent under-served from groups
- Do not have professional experience of working in the field of genomics
- Are available to attend (virtual) induction training on 2 July and the first meeting on 3 July 2025
What will I need to do as a member?
Members will be expected to attend four meetings a year, lasting approximately 6 hours, with regular breaks, where they will consult on topics such as research, clinical trials, patient experience and testing, to help shape the future of genomics for patients across Wales.
How long will I be on the Sounding Board for?
The length of term as a Sounding Board member is two years.
Applications are open until 31 May, if you feel that you or anyone you know may be interested then please see their website or role description for further information or register your interest here.
