GUIA: a digital platform to facilitate result disclosure in genetic counseling.

ABSTRACT:

Purpose

Use of genomic sequencing is increasing at a pace that requires technological solutions to effectively meet the needs of a growing patient population. We developed GUÍA, a web-based application, to enhance the delivery of genomic results and related clinical information to patients and families.

Methods

GUÍA development occurred in five overlapping phases: formative research, content development, stakeholder/community member input, user interface design, and web application development. Development was informed by formative qualitative research involving parents (N = 22) whose children underwent genomic testing. Participants enrolled in the NYCKidSeq pilot study (N = 18) completed structured feedback interviews post-result disclosure using GUÍA. Genetic specialists,

SUBMITTER: Suckiel SA 

PROVIDER: S-EPMC8105171 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature