Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 Aug;21(8):1691-1698.
doi: 10.1038/s41436-018-0402-0. Epub 2018 Dec 21.

Cancer communication research in the era of genomics and precision medicine: a scoping review

Kimberly A Kaphingst  1   2 , Emily Peterson  3 , Jingsong Zhao  4 , Anna Gaysynsky  5 , Ashley Elrick  6 , Soo Jung Hong  7 , Melinda Krakow  3 , Manusheela Pokharel  6 , Chelsea L Ratcliff  6 , William M P Klein  3 , Muin J Khoury  8 , Wen-Ying Sylvia Chou  3
Affiliations

Cancer communication research in the era of genomics and precision medicine: a scoping review

Kimberly A Kaphingst et al. Genet Med. 2019 Aug.

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.

Keywords: cancer; communication; decision making; genetic testing; return of results.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Phases of cancer-related genetic and genomic testing (CGT) communication.
Figure 2.
Figure 2.
PRISMA flow diagram.
Figure 3.
Figure 3.
Outcome and theme categories by study design and phase of CGT continuum. a. Outcome categories for randomized trials and quasi-experiments (n=70). b. Outcome categories for quantitative observational studies (n=279). c. Theme categories for qualitative studies (n=120). d. Outcome and theme categories for mixed methods studies (n=32).
Figure 3.
Figure 3.
Outcome and theme categories by study design and phase of CGT continuum. a. Outcome categories for randomized trials and quasi-experiments (n=70). b. Outcome categories for quantitative observational studies (n=279). c. Theme categories for qualitative studies (n=120). d. Outcome and theme categories for mixed methods studies (n=32).
See this image and copyright information in PMC

References

    1. Kensler TW, Spira A, Garber JE, Szabo E, Lee JJ, Dong Z. Transforming cancer prevention through precision medicine and immune-oncology. Cancer Prev Res 2016;9(1):2–10 - PMC - PubMed
    1. Judkins T, Leclair B, Bowles K, et al. Development and analytical validation of a 25-gene next generation sequencing panel that includes the BRCA1 and BRCA2 genes to assess hereditary cancer risk. BMC Cancer 2015;15:215. - PMC - PubMed
    1. Hall MJ, Forman AD, Pilarski R, Wiesner G, Giri VN. Gene panel testing for inherited cancer risk. J Natl Comp Cancer Network 2014;12(9):1339–1346. - PubMed
    1. Hiraki S, Rinella ES, Schnabel F, Oratz R, Ostrer H. Cancer risk assessment using genetic panel testing: considerations for clinical application. J Genet Couns 2014;23:604–617. - PubMed
    1. Beery TA, Williams JK. Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders. Genet Test 2007;11(2):111–123. - PubMed

Publication types

LinkOut - more resources