Elizabeth G Liles1, Michael C Leo2, Amanda S Freed3, Kathryn M Porter4, Jamilyn M Zepp5, Tia L Kauffman2, Erin Keast2, Carmit K McMullen2, Inga Gruß2, Barbara B Biesecker6, Kristin R Muessig5, Donna J Eubanks2, Laura M Amendola3, Michael O Dorschner3, Bradley A Rolf3, Gail P Jarvik3, Katrina A B Goddard5, Benjamin S Wilfond7. 1. Kaiser Permanente Center for Health Research, Portland, OR. Electronic address: Beth.G.Liles@kpchr.org. 2. Kaiser Permanente Center for Health Research, Portland, OR. 3. Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, Seattle, WA. 4. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA. 5. Department of Translational and Applied Genomics, Center for Health Research, Kaiser Permanente Northwest, Portland, OR. 6. Genetics, Bioinformatics and Translation, RTI International, Washington, D.C. 7. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA; Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.
Abstract
PURPOSE: Individuals having genomic sequencing can choose to be notified about pathogenic variants in genes unrelated to the testing indication. A decision aid can facilitate weighing one's values before making a choice about these additional results. METHODS: We conducted a randomized trial (N = 231) comparing informed values-choice congruence among adults at risk for a hereditary cancer syndrome who viewed either the Optional Results Choice Aid (ORCA) or web-based additional findings information alone. ORCA is values-focused with a low-literacy design. RESULTS: Individuals in both arms had informed values-choice congruence (75% and 73% in the decision aid and web-based groups, respectively; odds ratio [OR] = 1.10, 95% CI = 0.58-2.08). Most participants had adequate knowledge (79% and 76% in the decision aid and web-based groups, respectively; OR = 1.20, 95% CI = 0.61-2.34), with no significant difference between groups. Most had information-seeking values (97% and 98% in the decision aid and web-based groups, respectively; OR = 0.59, 95% CI = 0.10-3.61) and chose to receive additional findings. CONCLUSION: The ORCA decision aid did not significantly improve informed values-choice congruence over web-based information in this cohort of adults deciding about genomic results. Both web-based approaches may be effective for adults to decide about receiving medically actionable additional results.
PURPOSE: Individuals having genomic sequencing can choose to be notified about pathogenic variants in genes unrelated to the testing indication. A decision aid can facilitate weighing one's values before making a choice about these additional results. METHODS: We conducted a randomized trial (N = 231) comparing informed values-choice congruence among adults at risk for a hereditary cancer syndrome who viewed either the Optional Results Choice Aid (ORCA) or web-based additional findings information alone. ORCA is values-focused with a low-literacy design. RESULTS: Individuals in both arms had informed values-choice congruence (75% and 73% in the decision aid and web-based groups, respectively; odds ratio [OR] = 1.10, 95% CI = 0.58-2.08). Most participants had adequate knowledge (79% and 76% in the decision aid and web-based groups, respectively; OR = 1.20, 95% CI = 0.61-2.34), with no significant difference between groups. Most had information-seeking values (97% and 98% in the decision aid and web-based groups, respectively; OR = 0.59, 95% CI = 0.10-3.61) and chose to receive additional findings. CONCLUSION: The ORCA decision aid did not significantly improve informed values-choice congruence over web-based information in this cohort of adults deciding about genomic results. Both web-based approaches may be effective for adults to decide about receiving medically actionable additional results.
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