Jonathan Roberts|Jill O. Robinson|Pamela M. Diamond|Archana Bharadwaj|Kurt D. Christensen|Kaitlyn B. Lee|Robert Green|Amy L. McGuire
Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: findings from the MedSeq Project
Michigan Department of Health and Human Services|University of Michigan–Ann Arbor|Baylor College of Medicine|The University of Texas Health Science Center at Houston|Michigan Department of Health and Human Services|University of Michigan–Ann Arbor|Brigham and Women's Hospital|Harvard University|Baylor College of Medicine|Brigham and Women's Hospital|Harvard University|Baylor College of Medicine
purposeto examine patients experiences clinical use wholegenome sequencing wgsmethodsa randomized trial compared primary care cardiology patients receiving wgs family health history fh information fh information alone 202 patients surveyed bl 6 months disclosure results 6mresultspatients mean age 55 years 50 female 81 college graduates reported low levels decisional regret mean 71100 high satisfaction physicians disclosure results median 2930 compared fhonly arm patients receiving wgs results likely report learning accurate disease risk information odds ratio 745 findings influential medical treatment odds ratio 239 sessions wgs results disclosed took longer 30 vs 15minutes particularly primary care patients patients expected utility sequencing bl higher perceived utility 6m several domains including impacting medical decision making 87 vs 54 influencing medication choice 73 vs 32conclusionpatients satisfied physicians communication wgs results perceived medically useful discrepancies expected versus perceived utility wgs results suggest need temper patients expectations potential benefits