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

Journal of Genetic Counseling
Laura M AmendolaCarrie Blout

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 decline rate for enrollment at the seven CSER sites ranged from 12 to 64% (median 28%) and varied based on age and disease status. Projects differed in their protocols for approaching potential participants and obtaining informed consent. Reasons for declining GS research were reported for 1088 potential participants. Commonly cited reasons were similar to those reported for clinical single gene testing and non-GS genetic research. The most frequen...Continue Reading

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Citations

Sep 14, 2018·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Casie A GenettiUNKNOWN BabySeq Project Team
Apr 2, 2019·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Hila Milo RasoulyWendy K Chung
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Jan 30, 2021·Genome Medicine·Anna C F Lewis, Robert C Green
Aug 18, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Andrea LenartzAnya E R Prince

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