“Telling Stories, Understanding Real Life Genetics: Developing an established education resource for contemporary genomic healthcare and global use

Telling Stories www.tellingstories.nhs.uk is a free to access, award-winning website created to support health professional education in genetics. Using a robust ethical framework, more than 100 real-life experiences have been gathered from people in the United Kingdom, with, at risk of, or caring for someone with a genetic condition.
To help educators and learners to identify the most appropriate content to meet their needs, the site is fully searchable. Stories have been curated under a range of themes including condition, inheritance pattern, intervention, professional role and clinical specialism. Each story is available to read online or download/print, and video clips are available for some stories. Additional information and activities are provided as a ‘toolkit’ for each story to support their use by educators within teaching sessions or as self-directed study for learners. Expert commentaries from experienced health professionals and lecturers are also available, providing additional perspectives to supplement the stories for educational purposes.
Originally developed with a focus on single-gene conditions the resource is currently being refreshed and new content will be gathered to represent contemporary genomic healthcare and new technologies.
The opportunity exists to expand the website further as an international resource for genomics education and training using the lived experience (i.e. patient and professional voice). Stories collected in other countries would reflect cultural, ethical and linguistic differences, as well as differences in health services and genomic testing infrastructure that wouldn’t be reflected if UK stories were ‘simply’ translated into other languages.