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

ABSTRACT:

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 alp

SUBMITTER: Freed AS 

PROVIDER: S-EPMC8099937 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature