Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium View Full Text


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Article Info

DATE

2018-03-01

AUTHORS

Laura M. Amendola, Jill O. Robinson, Ragan Hart, Sawona Biswas, Kaitlyn Lee, Barbara A. Bernhardt, Kelly East, Marian J. Gilmore, Tia L. Kauffman, Katie L. Lewis, Myra Roche, Sarah Scollon, Julia Wynn, Carrie 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 frequently cited reason for decline was study logistics (35%); thus, addressing logistical barriers to enrollment may positively impact GS study recruitment. Privacy and discrimination concerns were cited by 13% of decliners, highlighting the need for researchers and providers to focus educational efforts in this area. The potential psychological burden of pursuing and receiving results from GS and not wanting to receive secondary findings, a concern specific to GS, have been cited as concerns in the literature. A minority of potential participants cited psychological impact (8%) or not wanting to receive secondary findings (2%) as reasons for decline, suggesting that these concerns were not major barriers to participation in these GS studies. Further research is necessary to explore the impact, if any, of different participant groups or study protocols on rates of decline for GS studies. Future studies exploring GS implementation should consider using standardized collection methods to examine reasons for decline in larger populations and more diverse healthcare settings. More... »

PAGES

1220-1227

References to SciGraph publications

  • 2014-09-17. Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients in GENOME MEDICINE
  • 2013-11-06. Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium in GENETICS IN MEDICINE
  • 2007-10-24. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease in EUROPEAN JOURNAL OF HUMAN GENETICS
  • 2017-01-16. Large, Prospective Analysis of the Reasons Patients Do Not Pursue BRCA Genetic Testing Following Genetic Counseling in JOURNAL OF GENETIC COUNSELING
  • 2014-06-03. Strategies for Enrollment of African Americans into Cancer Genetic Studies in JOURNAL OF CANCER EDUCATION
  • 2014-01-23. Factors influencing recruitment to research: qualitative study of the experiences and perceptions of research teams in BMC MEDICAL RESEARCH METHODOLOGY
  • 2013-01-31. Genetic discrimination and life insurance: a systematic review of the evidence in BMC MEDICINE
  • 2017-03-17. Reasons for Declining Preconception Expanded Carrier Screening Using Genome Sequencing in JOURNAL OF GENETIC COUNSELING
  • 2014-11-20. The hidden harm behind the return of results from personal genome services: a need for rigorous and responsible evaluation in GENETICS IN MEDICINE
  • 2012-04-01. Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA) in JOURNAL OF GENETIC COUNSELING
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    http://scigraph.springernature.com/pub.10.1007/s10897-018-0243-7

    DOI

    http://dx.doi.org/10.1007/s10897-018-0243-7

    DIMENSIONS

    https://app.dimensions.ai/details/publication/pub.1101293915

    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/29497922


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    379 rdf:type schema:Organization
     




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