Defining personal utility in genomics: A Delphi study.
J N KohlerErin TurbittK L LewisB S WilfondL JamalH L PeayL G BieseckerB B BieseckerPublished in: Clinical genetics (2017)
Our findings represent the first systematic effort to delineate elements of personal utility that may be used to anticipate participant expectation and inform genetic counseling prior to sequencing. The 24 items reported need to be studied further in additional clinical genome sequencing studies to assess generalizability in other populations. Further research will help to understand motivations and to predict the meaning and use of results.