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Abstract

Effective use of genetic and genomic data in cancer prevention and treatment depends on adequate communication with patients and the public. Although relevant empirical work has emerged, the scope and outcomes of this communication research have not been characterized. We conducted a comprehensive scoping review of recent published research (2010–2017) on communication of cancer-related genetic and genomic testing (CGT) information. Searches in six databases revealed 9243 unique records; 513 papers were included. Most papers utilized an observational quantitative design; fewer utilized an experimental design. More attention has been paid to outcomes of CGT results disclosure than to decision making regarding CGT uptake or the process of results disclosure. Psychosocial outcomes were most common across studies. This literature has a strong focus on BRCA1/2, with few papers focused on Lynch syndrome or next-generation technologies. Women, Caucasians, older adults, and those of higher socioeconomic status were overrepresented. Research gaps identified include the need for studies on the process of CGT communication; examining behavioral, decision making, and communication outcomes; and inclusion of diverse populations. Addressing these gaps can help improve the use of genomics in cancer control and reduce disparities in access to and use of CGT.

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Acknowledgements

Financial support was provided by the National Cancer Institute’s Behavioral Research Program through HHSN261201700078P. We also acknowledge the direct financial support for the research reported in this publication provided by the Huntsman Cancer Foundation. We would like to acknowledge assistance from the Clinical and Translational Science Award (CTSA) Systematic Review Core at the University of Utah. We also thank Courtney Tern and Angela Falisi for their work as coders, and Bradford Hesse and Charlisse Caga-Anan for their invaluable contributions to the study design. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health (NIH).

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Affiliations

  1. Huntsman Cancer Institute, Salt Lake City, UT, USA

    • Kimberly A. Kaphingst ScD
    •  & Jingsong Zhao MPH
  2. Department of Communication, University of Utah, Salt Lake City, UT, USA

    • Kimberly A. Kaphingst ScD
    • , Ashley Elrick MA
    • , Manusheela Pokharel MS
    •  & Chelsea L. Ratcliff MA
  3. National Cancer Institute, Bethesda, MD, USA

    • Emily Peterson PhD
    • , Melinda Krakow PhD
    • , William M. P. Klein PhD
    •  & Wen-Ying Sylvia Chou PhD, MPH
  4. ICF, Rockville, MD, USA

    • Anna Gaysynsky MPH
  5. National University of Singapore, Singapore, Singapore

    • Soo Jung Hong PhD
  6. Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GA, USA

    • Muin J. Khoury MD, PhD

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Correspondence to Kimberly A. Kaphingst ScD.

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https://doi.org/10.1038/s41436-018-0402-0