Abstract
Children and young people with rare and inherited diseases will be significant beneficiaries of genome sequencing. However, most educational resources are developed for adults. To address this gap in informational resources, we have co-designed, developed and evaluated an educational resource about genome sequencing for young people. The first animation explains what a genome is, genomic variation and genome sequencing (“My Genome Sequence”: http://bit.ly/mygenomesequence), the second focuses on the limitations and uncertainties of genome sequencing (“My Genome Sequence part 2”: http://bit.ly/mygenomesequence2). In total, 554 school pupils (11–15 years) took part in the quantitative evaluation. Mean objective knowledge increased from before to after watching one or both animations (4.24 vs 7.60 respectively; t = 32.16, p < 0.001). Self-rated awareness and understanding of the words ‘genome’ and ‘genome sequencing’ increased significantly after watching the animation. Most pupils felt they understood the benefits of sequencing after watching one (75.4%) or both animations (76.6%). Only 17.3% felt they understood the limitations and uncertainties after watching the first, however this was higher among those watching both (58.5%, p < 0.001). Twelve young people, 14 parents and 3 health professionals consenting in the 100,000 Genomes Project reported that the animation was clear and engaging, eased concerns about the process and empowered young people to take an active role in decision-making. To increase accessibility, subtitles in other languages could be added, and the script could be made available in a leaflet format for those that do not have internet access. Future research could focus on formally evaluating the animations in a clinical setting.
Highlights
Children and young people will be significant beneficiaries of genome sequencing (GS) technology as the majority (50–75%) of rare diseases affect children [1]
In preparation for the implementation of GS as a clinical service in the UK National Health Service (NHS), we developed and evaluated two animations that were codesigned with young people
Staff members consenting families into the 100,000 Genomes Project (‘consenters’), who had shown the animation during the appointment were invited to take part in a face-to-face semi-structured interview. Young people and their parents were asked: what they thought of the animation, what impact it had on the consent appointment, whether it had an impact on their understanding of genome sequencing and at what point it would be most useful to have seen the animation
Summary
Children and young people will be significant beneficiaries of genome sequencing (GS) technology as the majority (50–75%) of rare diseases affect children [1]. A number of online educational resources about GS have been developed for patients These are primarily aimed at adults [3], have been developed for people taking part in specific projects such as the 100,000 Genomes Project [4, 5], or are not designed for use in the clinic [6]. Young people with health-related issues are likely to face physical, psychological and social challenges that differ significantly from those of both children and adults [7, 8] As such it is seen as important to involve young people in the development of interventions designed for their use [9]. We report on (1) the development, and (2) evaluation of the animations in terms of knowledge, attitude and satisfaction
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