Abstract
ObjectivesAs 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.MethodsA 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.ResultsParticipants 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.ConclusionsClinicians 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.
Highlights
As whole genome sequencing (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
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
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
Summary
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. In the United States a 2013 American College of Medical Genetics (ACMG) report suggested that minors should not be offered routine carrier testing and that predictive testing should be deferred unless it would cause substantial psychosocial distress [5]. This argument is justified in part by citing the limited clinical utility of childhood predictive testing for adult conditions and the potential impact of risk information on children and their families. Because WGS can reveal carrier status, predictive genetic risks, and a wide range of other health risks that vary in severity and clinical utility, some see these results as typically being more appropriate for adults [6,7]
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