Date Published: March 23, 2017
Publisher: Public Library of Science
Author(s): Christopher H. Wade, Kailyn R. Elliott, Jacobus P. van Wouwe.
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.
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.
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. 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.
As WGS becomes increasingly available in standard clinical care, there has been interest in expanding the use of WGS beyond diagnostic purposes to prevent disease and facilitate early treatment. This raises the question of when in a patients’ lifespan WGS services should be provided as part of standard practice . Although some have suggested that WGS could be integrated into pediatric care [2,3], the approach that is currently recommended is to postpone offering WGS services until a patient reaches the age of majority (e.g. 18-years-old in most countries). So, in this model, the transition into young adulthood and legal independence may be accompanied by a decision about whether to undergo WGS.
As the accessibility of WGS continues to improve, clinicians and policymakers will need to clarify expectations for who can obtain these services and what genomic information will be reported. The findings of this study demonstrated that young adults ages 18–19 have considerable interest in obtaining WGS and were positively inclined toward receiving all types of genomic information examined in the study. Although the young adults had a desire for choice among different types of information, a majority of participants did not appear to exercise that option when selecting the genomic information they would want to be reported.