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

• Published in: Social science & medicine (1982) 2014-08, Vol.114, p.26-37
• Main Authors: Butrick, Morgan N., Vanhusen, Lauren, Leventhal, Kara-Grace, Hooker, Gillian W., Nusbaum, Rachel, Peshkin, Beth N., Salehizadeh, Yasmin, Pavlick, Jessica, Schwartz, Marc D., Graves, Kristi D.
• Format: Article
• Language: English
• Subjects: Aged; Biological and medical sciences; Cancer; Clinics; Colorectal cancer; Colorectal Neoplasms - ethnology; Colorectal Neoplasms - genetics; Communication; Continental Population Groups - genetics; Continental Population Groups - statistics & numerical data; Counseling; Counselling; Female; Gastroenterology. Liver. Pancreas. Abdomen; Genetic Counseling; Genetic Predisposition to Disease - ethnology; Genetic testing; Genetic Testing - standards; Genetics; Genomic testing; Genomics; Humans; Language; Limitations; Male; Medical sciences; Middle Aged; Minority Groups - education; Minority Groups - statistics & numerical data; Miscellaneous; Patient Education as Topic; Patients; Physician-Patient Relations; Polymorphism, Single Nucleotide; Prevention and actions; Primary Health Care; Prospective Studies; Public health. Hygiene; Public health. Hygiene-occupational medicine; Race; Risk; Risk Assessment; Social sciences; Stomach. Duodenum. Small intestine. Colon. Rectum. Anus; Technology; Tumors; U.S.A; United States
• ISSN: 0277-9536; 1873-5347
• DOI: 10.1016/j.socscimed.2014.05.014

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 biomedically 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. •Genomic risk results for racial minorities have limited interpretability.•When this limitation was explained, many minority participants did not respond.•Of participants who did respond, negative reactions were notable.•Specific communication processes during genetic counseling may enhance discussion.