A personalized genomic results e-booklet, co-designed and pilot-tested by families.

ABSTRACT:

Objective

To develop and evaluate a personalizable genomic results e-booklet that helps families understand their genomic testing results and navigate available resources.

Methods

The need for the Genomics Results e-Booklet was identified by families, after which this tool was developed by a team of clinical researchers and three parent-advisors. We customized the genomic results e-booklet for 50 families participating in a genomic sequencing research study. We conducted an assessment using a 19-question survey and semi-structured interviews to elicit feedback and iteratively improve the tool.

Results

25 users provided feedback via questionnaires and seven respondents were interviewed. Genomic Results e-Booklet recipients responded favorably: 96% of participants state

SUBMITTER: Handra J 

PROVIDER: S-EPMC10194288 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature