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

• Published in: Patient Education and Counseling
• 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: Text
• Language: English
• Published: 2020
• Subjects: Article; Orca
• Online Access: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099937/; http://www.ncbi.nlm.nih.gov/pubmed/33191058; https://doi.org/10.1016/j.pec.2020.10.038

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. PRACTICE IMPLICATIONS: 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.