PHG Foundation | www.phgfoundation.org

The UK’s NHS National Genetics Education and Development Centre has developed a resource of ‘real life’ stories of the experiences of patients and their families, carers and health professionals in dealing with the impact of genetic conditions on their lives or professional practice. The resource, called “Telling Stories: Understanding Real Life Genetics”, consists of interview transcripts augmented by suggested activities, highlighted ‘points for reflection’, key quotes, links to selected websites and, in some cases, video clips. It is aimed at people studying to become health professionals, those seeking in-service professional development, and people teaching on pre-or post-registration training programmes.

Stories can be selected by searching one of six key themes: genetic conditions, inheritance, genetic intervention, issues raised, professional role, and nursing competence. Within each theme, the stories are organised to highlight key teaching points and present these points in a structured way. For example, within the ‘issues raised’ theme, stories are grouped under the headings ethical issues, cultural issues, reproductive choices, communication, care and management, the family as expert, impact on family, friends and community, education and awareness, and genetics knowledge for practice. The resource is designed particularly to relate to the Nursing Competences for Genetics developed by the Genomics Policy Unit at the University of Glamorgan.

Those using the resource are encouraged to send their feedback and to help contribute to the resource by suggesting new stories that could be added.