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JNCI Monographs 1999 1999(25):59-66;
© 1999 by Oxford University Press
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Journal of the National Cancer Institute Monographs, No. 25, 59-66, 1999
© 1999 Oxford University Press

Risk Communication in Genetic Testing for Cancer Susceptibility

Robert T. Croyle, Caryn Lerman

Affiliations of authors: R. T. Croyle, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD; C. Lerman, Lombardi Cancer Center, Georgetown University Medical Center, Washington, DC.

Correspondence to: Robert T. Croyle, Ph.D., National Institutes of Health, MSC 7326, Executive Plaza North, Rm. 211, Bethesda, MD 20892-7326 (e-mail: bc136e{at}nih.gov).

Risk communication is an integral part of genetic counseling and testing for cancer susceptibility. This paper reviews the emerging literature on this topic. Three relevant aspects of risk communication are addressed: communication of individual risk, communication of the risks inherent in genetic testing, and family communications related to risk. These studies suggest that (a) most individuals with some family history of cancer, including those at low to moderate risk, overestimate their personal cancer risk; (b) awareness of the risks of genetic testing is limited; (c) decision making about genetic testing is influenced strongly by exaggerated perceptions of personal cancer risk and less so by perceptions of the risks of genetic testing; (d) perceptions of personal risk of cancer are resistant to standard education and counseling approaches; (e) psychologic distress and coping processes influence the processing of risk information and subsequent decision making in genetic testing; and (f) family influences play an important role in risk awareness, genetic testing decisions, and outcomes. To study these issues further, new theoretical models and measures of risk perceptions need to be developed. Both observational and experimental methods should be used to examine both the content and process of risk communication in cancer genetic counseling and testing. Emotional, familial, and sociocultural influences on the risk communication process require special attention.


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