Challenges to informed consent for exome sequencing: A best-worst scaling experiment.

ABSTRACT: As exome sequencing expands as a diagnostic tool, patients and providers have voiced concerns about communicating the breadth and scope of potential results when obtaining informed consent. This study aimed to understand how genetic counselors prioritize essential components of the informed consent process and whether counselor factors influence these decisions. Development of a best-worst scaling experiment was informed by a systematic literature review and two focus groups. In all, 11 choice sets were created using a balanced incomplete block design, where participants selected the most and least important object in each set. Mean best-worst (BW) scores were calculated to summarize the relative importance of each object, and mediation analyses assessed whether responses were associated w

SUBMITTER: Gore RH 

PROVIDER: S-EPMC7422696 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature