Enhancing genomic laboratory reports from the patients' view: A qualitative analysis.

ABSTRACT: The purpose of this study was to develop a family genomic laboratory report designed to communicate genome sequencing results to parents of children who were participating in a whole genome sequencing clinical research study. Semi-structured interviews were conducted with parents of children who participated in a whole genome sequencing clinical research study to address the elements, language and format of a sample family-directed genome laboratory report. The qualitative interviews were followed by two focus groups aimed at evaluating example presentations of information about prognosis and next steps related to the whole genome sequencing result. Three themes emerged from the qualitative data: (i) Parents described a continual search for valid information and resources regarding their c

SUBMITTER: Stuckey H 

PROVIDER: S-EPMC4744953 | biostudies-literature | 2015 Oct

REPOSITORIES: biostudies-literature