ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial
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 = 23...
Published in: | Genetics in Medicine |
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Main Authors: | , , , , , , , , , , , , , , , , , |
Format: | Text |
Language: | English |
Published: |
2022
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Subjects: | |
Online Access: | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9586129/ http://www.ncbi.nlm.nih.gov/pubmed/35522237 https://doi.org/10.1016/j.gim.2022.04.008 |
Summary: | 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; 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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