Wade Christopher H, Elliott Kailyn R
School of Nursing & Health Studies, University of Washington Bothell, Bothell, Washington, United States of America.
School of Medicine, University of Washington, Seattle, Washington, United States of America.
PLoS One. 2017 Mar 23;12(3):e0174131. doi: 10.1371/journal.pone.0174131. eCollection 2017.
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.
随着全基因组测序（WGS）越来越普及，临床医生将面临向处于人生不同阶段的个体传达复杂信息的问题。本研究的目的是描述年轻人对于获取WGS、了解不同类型的基因组信息以及对披露哪些结果有选择权的看法。
对145名18岁和19岁的不同群体进行了一项混合方法描述性研究。参与者观看了一段关于WGS的信息视频，然后完成了一项在线调查。
参与者对获取WGS以及了解一系列健康状况和特征持积极态度。如果发现严重风险，对学习WGS信息兴趣的增加与预期处理情感后果的能力显著相关（β = 0.13，P = 0.04）。年轻人希望能够选择返回哪些类型的基因组风险信息，如果由临床医生做出这些决定，他们接受WGS的意愿会降低（t(138) = -7.14，P < 0.01）。定性分析表明，年轻人在WGS决策中强调程序因素，并且WGS在感知健康益处方面对测试偏好和WGS结果的预期使用起着重要作用。
临床医生可能会遇到年轻人对获取WGS结果的热情，可能需要制定策略以确保这种偏好是充分知情的。
