Young adults’ attitudes to sharing whole-genome sequencing information: a university-based survey

BACKGROUND: Genomic services are increasingly accessible to young adults starting their independent lives with responsibility for their self-care, yet their attitudes to sharing genomic information remain under-researched. This study explored attitudes of university-based 18–25 year-olds towards sharing personal whole-genome sequencing (WGS) information with relatives. METHODS: We surveyed 112 young adults. Hypotheses were tested regarding the relationships between their preferences for sharing personal WGS information with relatives and factors including their gender, previous genetics-specific education, general educational attainment level and current study in a science, technology, engineering, maths or medicine (STEMM) field. RESULTS: Most participants were positive about both their intention to share their WGS results with their parents and siblings, and their desire to know their relatives’ results. Being female and having a university-level genetics education were consistently positively correlated with intention to share one’s results with parents and with siblings as well as the desire to know relatives’ results. Additionally, females who had undertaken a genetics course at university had significantly greater intentions and desires than females who had not. Lower general educational attainment was related to a lower intention to share with siblings. Participants who were in a STEMM field had a greater desire to know their relatives’ results. CONCLUSIONS: Participants’ gender and prior genetics education were consistently related to their intentions to share WGS results with relatives and their desire to know relatives’ results. Educational attainment was found to be positively correlated with intention to share with siblings. Being in a STEMM field was related to participants’ desire to know their relatives’ results. These findings indicate that gender and genetics education are particularly important influencers on young adults’ stated sharing preferences. More research is required to examine the dependent variables studied to further understand their influence on attitudes to sharing WGS results. These findings are particularly interesting for information provision and support before genomic sequencing and post-results to improve the outcomes for individuals and their relatives. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12920-019-0499-2) contains supplementary material, which is available to authorized users.