Co-design, implementation, and evaluation of plain language genomic test reports.

ABSTRACT: Understanding and communicating genomic results can be challenging for families and health professionals without genetic specialty training. Unlike modifying existing laboratory reports, plain language genomic test reports provide an opportunity for patient/family-centered approaches. However, emerging examples generally lack co-design and/or evaluation in real-world settings. Through co-design involving patient groups, plain language experts, educators, and genetic health professionals, plain language genomic test report templates were produced for common test outcomes in rare diseases. Eight plain language genomic test report templates were developed. These reports were piloted and evaluated as part of a national pediatric ultra-rapid genomic testing program. Family and genetic health pr

SUBMITTER: Brett GR 

PROVIDER: S-EPMC9588009 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature