This June, the Wales Gene Park Education & Engagement Team delivered a ‘Spotlight on Genomics’ event, in collaboration with Dr Emma Tonkin, Associate Professor at the University of South Wales (USW) for healthcare students studying at the university.
Students in their second year of study at USW, including midwifery, nursing, physiotherapy and occupational therapy students were invited to attend a series of talks focusing on a wide range of genetics topics. Themes included pharmacogenomics, the study of drug response based on an individual’s genetics, as well as consideration of genetics in mental health cases, and ethical dilemmas that arise within the topic of genetics. The students were also fortunate to hear a parent’s lived experience of caring for a child with a rare genetic condition.
In the Brecon Building of USW’S Treforest Campus, we were joined by many speakers from the likes of the SWAN (Syndromes Without A Name) Clinic in Wales, the All Wales Medical Genomics Service (AWMGS), Bangor University and more.
To give students a first-hand account of lived experience with rare genetic conditions, we were joined by Naomi Webborn – a parent of a child with a rare congenital condition called TOF Syndrome (Tracheo-Oesophageal Fistula). Naomi is an advocate of the TOFS charity, and during the talk she spoke candidly about her family’s journey with TOF syndrome, mentioning the amazing things they have done together to raise awareness of the condition. Her educational yet heartfelt first-hand account had audience members complimenting the talk, calling it a ‘Powerful presentation’ and that it ‘Puts things into perspective’.
“Very interesting to learn about TOF and really appreciate hearing from a parents perspective” – USW Healthcare student
We were then joined by Sian Nisbet, Consultant Genetic Counsellor of the All Wales Medical Genomics Service (AWMGS). Sian spoke on the topic of mainstreaming genomics in the NHS, honing in on the importance of educating the NHS workforce on genetics. One student fed back that it made them ‘want to read more about genomics, particularly around oncology’ and that this ‘Expanded my knowledge on genomics and the protocol for testing criteria’.
Zoe Morrison, a Clinical Nurse Specialist from University Hospital of Wales spoke to the students about the support and services that the All Wales Syndromes Without A Name (SWAN) Clinic provides to rare condition patients in Wales. Zoe is UK leader and cofounding member of the Global Nursing Network for Rare Diseases, which she signposted as a future resource for the students. An audience member said the talk ‘really showed the value of this clinic’.
Donna Duffin, Principal Genetic Counsellor of AWMGS delivered a talk about the All Wales Psychiatric Genomics Service (AWPGS), presenting patient case study examples and giving the students background as to how this first of its kind service in Wales is benefitting patients and their loved ones. This was followed by an interactive session based on ethical dilemmas health professionals face day to day related to genetics & genomics, delivered by Dr Rachel Irving, Consultant Clinical Geneticist of AWMGS. Students fed back the session was ‘So interesting and interactive’ and ‘eye-opening’.
The penultimate talk of the day was by Professor Dyfrig Hughes of Bangor University via zoom, who delved into the topic of Pharmacogenomics, explaining how genetic knowledge due to advances in the field can allow therapeutic drug prescription to be personalised, based on the individual’s genetic makeup. The topic itself could be construed as complex, but an audience member commented the talk was ‘brilliant’ and ‘informative’ whilst ‘covering the basics’.
We’re very grateful to all of our speakers for making such an engaging and educational event, and for raising awareness of genetics and genomics amongst the healthcare students at USW. We hope the students enjoyed, and we also want to thank Dr Emma Tonkin and colleagues, for allowing us to deliver such an exciting and informative event.
If you’d like to discuss holding an event similar to this, please contact us at walesgenepark@cardiff.ac.uk
By Isabella Parker
Education & Engagement Officer, Wales Gene Park
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