Discussing race-related limitations of genomic testing for colon cancer risk: Implications for education and counseling

Abstract

This study examines communication about limitations of genomic results interpretation for colon cancer risk during education and counseling of minority participants. As part of a larger study conducted from 2010 to 2012, participants recruited from a large primary care clinic were offered testing for a research panel of 3 genomic markers (single nucleotide polymorphisms or SNPs) for colorectal cancer risk. Genetic counselors conducted pre- and post-test sessions which included discussion of limitations of result interpretation due to the lack of racial/ethnic diversity in research populations from which risk data are derived. Sessions were audio-recorded, transcribed and thematically analyzed. Many participants did not respond directly to this limitation. Among the participants that responded directly to this race-related limitation, many responses were negative. However, a few participants connected the limited minority information about SNPs with the importance of their current research participation. Genetic counselor discussions of this limitation were bio-medically focused with limited explanations for the lacking data. The communication process themes identified included: low immediacy (infrequent use of language directly involving a participant), verbal dominance (greater speaking ratio of the counselor to the patient) and wide variation in the degree of interactivity (or the amount of turn-taking during the discussion). Placed within the larger literature on patient-provider communication, these present results provide insight into the dynamics surrounding race-related educational content for genomic testing and other emerging technologies. Clinicians may be better able to engage patients in the use of new genomic technology by increasing their awareness of specific communication processes and patterns during education or counseling sessions.

The sociology of cancer: a decade of research

“…Research also suggests that these encounters, and the results of genetic testing, may be experienced as more uncertain for ethnic minority patients given the lack of ethnic diversity within research populations from which genetic data were derived (Butrick et al . ).…”

“…In the cases of uncertain genetic status, family history and past clinical experience may be drawn on more heavily than numerical (risk) information provided by genetic testing (Aasen and Skolbekken 2014). Research also suggests that these encounters, and the results of genetic testing, may be experienced as more uncertain for ethnic minority patients given the lack of ethnic diversity within research populations from which genetic data were derived (Butrick et al 2014).…”

Colorectal Cancer Risk Prediction Using the rs4939827 Polymorphism of the SMAD7 Gene in the Romanian Population

“…Although some researchers explain alternate racial/ethnic classifications based on disparities in experiences with healthcare across racial/ethnic minority groups, this study had an interest in the experiences of all self-identified individuals, regardless of race or ethnicity [44].…”

Genetic counselors as social and behavioral scientists in the era of precision medicine

“…A limited number of studies assessing the process of genetic counseling have reported use of dense, highly technical language by counselors (Butrick et al, ; Kelly et al, ; Roter et al, .). Conveying detailed genetic information is apparently the dominant practice model, one that is unlikely to be effective with many clients, particularly those with lower scientific literacy and formal education attainment (Joseph & Guerra, ; Joseph et al, ).…”