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 |
---|---|
Main Authors: | , , , , , , , , , , , , , , , , , |
Format: | Text |
Language: | English |
Published: |
2022
|
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 |
id |
ftpubmed:oai:pubmedcentral.nih.gov:9586129 |
---|---|
record_format |
openpolar |
spelling |
ftpubmed:oai:pubmedcentral.nih.gov:9586129 2023-08-27T04:11:25+02:00 ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial Liles, Elizabeth G. Leo, Michael C. Freed, Amanda S. Porter, Kathryn M. Zepp, Jamilyn M. Kauffman, Tia L. Keast, Erin McMullen, Carmit K. Gruß, Inga Biesecker, Barbara B. Muessig, Kristin R. Eubanks, Donna J. Amendola, Laura M. Dorschner, Michael O. Rolf, Bradley A. Jarvik, Gail P. Goddard, Katrina A.B. Wilfond, Benjamin S. 2022-08 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 en eng http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9586129/ http://www.ncbi.nlm.nih.gov/pubmed/35522237 http://dx.doi.org/10.1016/j.gim.2022.04.008 Genet Med Article Text 2022 ftpubmed https://doi.org/10.1016/j.gim.2022.04.008 2023-08-06T00:51:39Z 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. Text Orca PubMed Central (PMC) Genetics in Medicine 24 8 1664 1674 |
institution |
Open Polar |
collection |
PubMed Central (PMC) |
op_collection_id |
ftpubmed |
language |
English |
topic |
Article |
spellingShingle |
Article Liles, Elizabeth G. Leo, Michael C. Freed, Amanda S. Porter, Kathryn M. Zepp, Jamilyn M. Kauffman, Tia L. Keast, Erin McMullen, Carmit K. Gruß, Inga Biesecker, Barbara B. Muessig, Kristin R. Eubanks, Donna J. Amendola, Laura M. Dorschner, Michael O. Rolf, Bradley A. Jarvik, Gail P. Goddard, Katrina A.B. Wilfond, Benjamin S. ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
topic_facet |
Article |
description |
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. |
format |
Text |
author |
Liles, Elizabeth G. Leo, Michael C. Freed, Amanda S. Porter, Kathryn M. Zepp, Jamilyn M. Kauffman, Tia L. Keast, Erin McMullen, Carmit K. Gruß, Inga Biesecker, Barbara B. Muessig, Kristin R. Eubanks, Donna J. Amendola, Laura M. Dorschner, Michael O. Rolf, Bradley A. Jarvik, Gail P. Goddard, Katrina A.B. Wilfond, Benjamin S. |
author_facet |
Liles, Elizabeth G. Leo, Michael C. Freed, Amanda S. Porter, Kathryn M. Zepp, Jamilyn M. Kauffman, Tia L. Keast, Erin McMullen, Carmit K. Gruß, Inga Biesecker, Barbara B. Muessig, Kristin R. Eubanks, Donna J. Amendola, Laura M. Dorschner, Michael O. Rolf, Bradley A. Jarvik, Gail P. Goddard, Katrina A.B. Wilfond, Benjamin S. |
author_sort |
Liles, Elizabeth G. |
title |
ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
title_short |
ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
title_full |
ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
title_fullStr |
ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
title_full_unstemmed |
ORCA, a values-based decision aid for selecting additional findings from genomic sequencing in adults: Efficacy results from a randomized trial |
title_sort |
orca, a values-based decision aid for selecting additional findings from genomic sequencing in adults: efficacy results from a randomized trial |
publishDate |
2022 |
url |
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 |
genre |
Orca |
genre_facet |
Orca |
op_source |
Genet Med |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9586129/ http://www.ncbi.nlm.nih.gov/pubmed/35522237 http://dx.doi.org/10.1016/j.gim.2022.04.008 |
op_doi |
https://doi.org/10.1016/j.gim.2022.04.008 |
container_title |
Genetics in Medicine |
container_volume |
24 |
container_issue |
8 |
container_start_page |
1664 |
op_container_end_page |
1674 |
_version_ |
1775354165717893120 |