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

Author(s): Kaphingst KA,  Peterson E,  Zhao J,  Gaysynsky A,  Elrick A,  Hong SJ,  Krakow M,  Pokharel M,  Ratcliff CL,  Klein WMP,  Khoury MJ,  Chou WS

Journal: Genet Med

Date: 2019 Aug

Major Program(s) or Research Group(s): CPFP

PubMed ID: 30573799

PMC ID: not available

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.