Christine Rini|Cynthia M. Khan|Elizabeth Moore|Myra I. Roche|James P. Evans|Jonathan S. Berg|Bradford C. Powell|Giselle Corbie-Smith|Ann Katherine M. Foreman|Ida Griesemer|Kristy Lee|Julianne O’Daniel|Gail E. Henderson
The who, what, and why of research participants’ intentions to request a broad range of secondary findings in a diagnostic genomic sequencing study
Hackensack University Medical Center|Blue Cross and Blue Shield of North Carolina Foundation|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill|University of North Carolina at Chapel Hill
diagnostic exome sequencing study north carolina clinical genomic evaluation nextgeneration exome sequencing project ncgenes investigated adult patients intentions request six categories secondary findings sfs low medical actionability correlates intentionsat enrollment eligible participants n 152 completed measures assessing sociodemographic clinical literacyrelated characteristics prior inperson diagnostic result disclosure visit received education categories sfs could request immediately receiving education visit participants completed measures intention learn sfs interest category anticipated regret learning learning categoryseventyeight percent participants intended learn least sfs logistic regressions examined intention learn findings versus none interest six individual categories yesno results revealed little association intentions sociodemographic clinical literacyrelated factors across outcomes participants anticipated regret learning sfs reported weaker intention learn odds ratios ors 047 071 participants anticipated regret learning findings reported stronger intention learn 161222intentions request sfs low medical actionability may strongly influenced participants desire avoid regret