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Family Practice Vol. 18, No. 4, 367-372
© Oxford University Press 2001

Perceptions of genetic risk assessment and education among first-degree relatives of colorectal cancer patients and implications for physicians

Helen MS Todora, Celette Sugg Skinner,a, Linda Gidday, Jennifer L Ivanovich,b, Sue Rawl,c and Alison J Whelan,d

Division of Health Behavior Research, Departments of Internal Medicine and Pediatrics, Washington University School of Medicine, 4444 Forest Park, Suite 6700, St Louis, MO 63108,
a Department of Surgery, Duke University Medical Center and Program in Prevention, Detection and Control, Duke University Comprehensive Cancer Center, Durham, NC 27514,
b Department of Medical Genetics and
d Department of Internal Medicine, Washington University School of Medicine, St Louis, MO 63110 and
c Indiana University School of Nursing, Indianapolis, IN 46202, USA.

Background. Genetic risk assessment and education is a clinical service that provides an opportunity for individuals with a strong family history of cancer to understand their risk better, identify a screening regimen and discuss benefits and limitations of genetic testing.

Objectives. The aim of this study was to assess knowledge of and attitudes to genetic risk assessment and education among first-degree relatives of patients with colorectal cancer.

Methods. We conducted focus groups among first-degree relatives of patients with colorectal cancer to assess perceptions of genetic risk assessment and education. In the groups, we elicited reactions using two definitions of genetic risk assessment and education—one brief and one more detailed—that might be used by a health practitioner during the referral process.

Results. Findings revealed a number of misconceptions and concerns including: (i) what is required to prepare for a session and a lack of desire to collect a family history; (ii) what is involved in a session (including assuming that genetic testing is always included in a session); (iii) distrust over accuracy and possible subjectivity of information provided; and (iv) fear of the effect that participation in a session might have on insurance status.

Conclusions. The findings suggest that health practitioners should educate individuals about genetic risk assessment and education during the initial referral process. Further studies should explore how best to do this.

Keywords. Colorectal cancer, education, genetics, risk communication.


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