Information Sharing Patterns in a Population Genetic Screening Pilot Study

Abstract

Population genetic screening for preventable adult-onset disease is an emerging public healthparadigm. There is limited information about the information sharing patterns of population screening participants. This thesis explored intent to share results by participants in a relatively small pilot population genetic screening study at three time points: invitation to participate (T0), consent to participate (T1), and after results disclosure (T2). More participants intend to share their results than not share at all time points. Intent to share is stratified by result at the T2 time point, with a higher proportion of those with positive screening results intending to share with family or friends and with their doctor. Following result disclosure, the proportion of participants in both groups answering “Don’t know” is decreased, suggesting less uncertainty about sharing regardless of result. Qualitative analysis of free text survey responses at the T1 and T2 timepoints showed that the two most common motivations to share information are to provide family members with important health information and to seek emotional support. Materials developed to promote information sharing after population genetic screening should emphasize both these benefits of sharing. Future research is needed to understand barriers to sharing information, particularly sharing with healthcare providers.