A decision aid for additional findings in genomic sequencing: Development and pilot testing

•Decision aids have been used in many fields to support quality decision making.•Additional findings are optional for individuals undergoing genomic sequencing.•We designed a novel decision aid about medically actionable additional findings.•It is targeted for a diverse cohort of adults including ad...

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Bibliographic Details
Published in:Patient education and counseling 2021-05, Vol.104 (5), p.960-968
Main Authors: Freed, Amanda S., Gruß, Inga, McMullen, Carmit K., Leo, Michael C., Kauffman, Tia L., Porter, Kathryn M., Muessig, Kristin R., Eubanks, Donna, Goddard, Katrina A.B., Wilfond, Benjamin S., Liles, Elizabeth G.
Format: Article
Language:English
Subjects:
Decision aid
Decision making
Decision support tools
Exome sequencing
Genomic sequencing
Incidental findings
Informed choice
Secondary findings
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Summary:•Decision aids have been used in many fields to support quality decision making.•Additional findings are optional for individuals undergoing genomic sequencing.•We designed a novel decision aid about medically actionable additional findings.•It is targeted for a diverse cohort of adults including adults with low literacy.•The decision aid may help users to make an informed, values-based choice. To describe the development of a web-based, patient-facing decision aid to support patients and research participants to make an informed, values-based decision about whether to receive additional results from genomic sequencing. We developed the decision aid following the multi-step process described in the International Patient Decision Aids Standards. This utilized literature review, focus groups, and alpha testing with research participants undergoing clinical genomic sequencing. The decision aid, the Optional Results Choice Aid (ORCA), includes a seven-question “values clarification exercise,” illustrative patient quotes, and summative guidance for the user. The decision aid was found to be highly readable, acceptable and relevant in alpha testing. We developed a decision aid to support informed, values-based decision making for patients and research participants considering whether to receive additional results from genomic sequencing. ORCA is being implemented in the NHGRI-funded Cancer Health Assessment Reaching Many (CHARM) study, where we are measuring informed values-choice congruence. ORCA was designed to support patients and research participants to make an informed, values-based decision about whether to receive additional results from genomic sequencing.
ISSN:0738-3991
1873-5134
DOI:10.1016/j.pec.2020.10.038