Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium.

ABSTRACT: Clinical and research settings are increasingly incorporating genomic sequencing (GS) technologies. Previous research has explored reasons for declining genetic testing and participation in genetic studies; however, there is a dearth of literature regarding why potential participants decline participation in GS research, and if any of these reasons are unique to GS. This knowledge is essential to promote informed decision-making and identify potential barriers to research participation and clinical implementation. We aggregated data from seven sites across the National Institutes of Health's Clinical Sequencing Exploratory Research (CSER) consortium on each project's procedures for recruitment, and rates of and reasons for decline. Data were analyzed using descriptive statistics. The decli

SUBMITTER: Amendola LM 

PROVIDER: S-EPMC6119550 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature