Background
Advances in genetics technology have led to an increasing repertoire of options to modify genetic predisposition and improve health outcomes. Traditionally, adults have comprised the main group presenting for genetic testing. However, with advances in knowledge of genetic risk and growing public awareness of testing options, adolescents and young adults (AYAs) are increasingly accessing genetic services, particularly for the assessment of hereditary cancer risk. Individuals presenting for genetic testing are supported by genetic counsellors; professionals primarily trained to working within adult-centred models of care. Increasing evidence highlights practice complexities faced in genetics work with AYAs including those related to engagement/communication, client versus family centred models of care, adherence and ethics. Evidence also illustrates deficits in education for genetic counsellors working with this client group. Youth friendly genetic counselling is a new and emerging field characterised by this practice complexity and increasing understanding of the unique implications of genetic counselling on AYA psychosocial wellbeing.
Methods
A reference group was formed in 2012 comprising experts in adolescent health and genetics and comprehensive literature review into genetic testing/counselling with AYAs was undertaken. Subsequently, a world first model of Youth Friendly Genetic Counselling was developed based on combined principles, theory and practice in AYA care and genetic counselling.
Results & Discussion
Processes of model development will be delineated. The model will be presented with emphasis on principles of AYA care and their application to genetic counselling practice. This model is being trialled with young people presenting for assessment of hereditary cancer risk. The anticipated impacts in improving the experience of care and outcomes for young people and up-skilling genetic counsellors will be described.