Preferences for the provision of whole genome sequencing services among young adults

Abstract

Objectives: As whole genome sequencing (WGS) becomes increasingly available, clinicians will be faced with conveying complex information to individuals at different stages in life. The purpose of this study is to characterize the views of young adults toward obtaining WGS, learning different types of genomic information, and having choice about which results are disclosed.

Methods: A mixed-methods descriptive study was conducted with a diverse group of 18 and 19-years-olds (N = 145). Participants watched an informational video about WGS and then completed an online survey.

Results: Participants held a positive attitude toward obtaining WGS and learning about a range of health conditions and traits. Increased interest in learning WGS information was significantly associated with anticipated capacity to handle the emotional consequences if a serious risk was found (β = 0.13, P = .04). Young adults wanted the ability to choose what types of genomic risk information would be returned and expressed decreased willingness to undergo WGS if clinicians made these decisions (t(138) = -7.14, P <.01). Qualitative analysis showed that young adults emphasized procedural factors in WGS decision-making and that perceived health benefits of WGS had a substantial role in testing preferences and anticipated usage of WGS results.

Conclusions: Clinicians are likely to encounter enthusiasm for obtaining WGS results among young adults and may need to develop strategies for ensuring that this preference is adequately informed.