Abstract
Informed consent for genetic testing for breast–ovarian cancer susceptibility requires that women understand basic concepts about the inheritance of cancer susceptibility and the benefits and risks associated with genetic testing. Women awaiting routine medical services (N = 220) were surveyed about their knowledge of breast cancer and cancer genetics and their perceptions of genetic testing and personal risk. There were no racial differences in median income or mean level of education. Compared to Caucasian women, African American women knew significantly less about breast cancer and about genetic risk for breast cancer. African American women had different psychological, social, and economic concerns as evidenced by how they weighted the benefits and risks of genetic testing. This study is the first to assess several dimensions of informed consent for genetic testing among a sociodemographically diverse group. The findings should enable health professionals to target the African American and lower-income populations with the appropriate education and counseling.
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REFERENCES
American Society of Clinical Oncology Subcommittee on Genetic Testing for Cancer Susceptibility (1996). Statement of the American society of clinical oncology: Genetic testing for cancer susceptibility. J. Clin. Oncol. 14: 1730-1736.
Audrain, J., Lerman, C., Rimer, B., Cella, D., Steffens, R., Gomez-Caminero, A., and the High Risk Breast Cancer Consortium (1995). Awareness of heightened breast cancer risk among first-degree relatives of recently diagnosed breast cancer patients. Cancer Epidemiol. Biomarkers Prev. 4: 561-565.
Benkendorf, J., Reutenauer, J., Hughes, C., Eads, N., Willison, J., Powers, M., and Lerman, C. (1998). Patients' attitudes about autonomy and confidentiality in genetic testing for breast-ovarian cancer susceptibility. Am. J. Med. Genet. 73: 296-303.
Biesecker, B., and Brody, L. (1997). Genetic susceptibility testing for breast and ovarian cancer: A progress report. J. Am. Med. Women's Assoc. 52: 22-27.
Chaliki, H., Loader, S., Levenkron, J., Logan-Young, W., Hall, J., and Rowley, P. (1995). Women's receptivity to testing for a genetic susceptibility to breast cancer. Am. J. Public Health 85: 1133-1135.
Committee on Assessing Genetic Risks, Division of Health Sciences Policy, Institute of Medicine (1994). Assessing Genetic Risks: Implications for Health and Social Policy, Andrews, L., Fullarton, J., Holtzman, N., and Motulsky, A. (eds.), National Academy Press, Washington, DC.
Davis, J. (1997). Predictive genetic tests: Problems and pitfalls. Ann. N.Y. Acad. Sci. 833: 42-46.
Douglass, M., Bartolucci, A., Waterbor, J., and Sirles, A. (1995). Breast cancer early detection: Differences between African American and white women's health beliefs and detection practices. Oncol. Nurs. Forum 22: 835-837.
Durfy, S., Buchanan, T., and Burke, W. (1998). Testing for Inherited Susceptibility to Breast Cancer: A survey of informed consent forms for BRCA1 and BRCA2 mutation testing. Am. J. Med. Genet. 75: 82-87.
Garber, J., and Patenaude, A. (1995). Ethical, social, and counselling issues in hereditary cancer susceptibility. Cancer Surv. 25: 381-397.
Geller, G., Botkin, J., Green, M., Press, N., Biesecker, B., Wilfond, B., Grana, G., Daly, M., Schneider, K., and Kahn, M. (1997). Genetic testing for susceptibility to adult-onset cancer. JAMA 277: 1467-1474.
Grann, V., Panageas, K., Whang, W., Antman, K., and Neugut, A. (1998). Decision analysis of prophylactic mastectomy and oophorectomy in BRCA1-positive or BRCA2-positive patients. J. Clin. Oncol. 16: 979-985.
Hoskins, K., Stopfer, J., Calzone, K., Merajver, S., Rebbeck, T., Garber, J., and Weber, B. (1995). Assessment and counseling for women with a family history of breast cancer. JAMA 273: 577-585.
Hughes, C., Gomez-Caminero, A., Benkendorf, J., Kerner, J., Isaacs, C., Barter, J., and Lerman, C. (1997). Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ. Counsel. 32: 51-62.
Jacobsen, P., Valdimarsdottir, H., Brown, K., and Offit, K. (1997). Decision-making about genetic testing among women at familial risk for breast cancer. Psychosom. Med. 59: 459-466.
King, S., and Schottenfeld, D. (1996). The “epidemic” of breast cancer in the U.S.— Determining the factors. Oncology 10: 453-472.
Lerman, C., Daly, M., Masny, A., and Balshem, A. (1994a). Attitudes about genetic testing for breast-ovarian cancer susceptibility. J. Clin. Oncol. 12: 843-850.
Lerman, C., Audrain, J., and Croyle, R. (1994b). DNA-testing for heritable breast cancer risks: Lessons from traditional genetic counseling. Ann. Behav. Med. 16: 327-333.
Lerman, C., Seay, J., Balshem, J., and Audrain, J. (1995a). Interest in genetic testing among first-degree relatives of breast cancer patients. Am. J. Med. Genet. 57: 385-392.
Lerman, C., Lustbader, E., Rimer, B., et al. (1995b). Effects of individualized breast cancer risk counseling: a randomized trial. J. Natl. Cancer Inst. 87: 286-292.
Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., Gold, K., Trock, B., Main, D., Lunch, J., Fulmore, C., Snyder, C., Lemon, S., Conway, T., Tonin, P., Lenoir, G., and Lynch, H. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. JAMA 275: 1885-1892.
Lerman, C., Biesecker, B., Benkendorf, J., Kerner, J., Gomez-Caminero, A., Hughes, C., and Reed, M. (1997). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J. Natl. Cancer Inst. 89: 148-157.
Marchant, D. (1994). Risk factors. Obstet. Gynecol. Clin. North Am. 21: 561-583.
Mark, H., Annas, G., Ricker, R., and Weitzel, J. (1996). Clinical and research issues in breast cancer genetics. Ann. Clin. Lab. Sci. 26: 396-408.
National Cancer Institute (1996). Understanding Breast Changes: A Health Guide for All Women, National Institutes of Health, Bethesda, MD.
Nelson, N. (1996). Caution guides genetic testing for hereditary cancer genes. J. Natl. Cancer Inst. 88: 70-72.
Offit, K. (1998). Clinical Cancer Genetics: Risk Counseling and Management, Wiley-Liss, New York.
Powell, D. (1994). Social and psychological aspects of breast cancer in African-American women. Ann. N.Y. Acad. Sci. 736: 131-139.
Rothstein, M. (1995). Genetic testing: Employability, insurability, and health reform. J. Natl. Cancer Inst. Monogr. 17: 87-90.
Royak-Schaler, R., DeVellis, B., Sorenson, J., Wilson, K., Lannin, D., and Emerson, J. (1995). Breast cancer in African-American families. Ann. N.Y. Acad. Sci. 768: 281-285.
Stager, J. (1993). The comprehensive breast cancer knowledge test: validity and reliability. J. Adv. Nurs. 18: 1133-1140.
Struewing, J., Lerman, C., Kase, R., Giambarresi, T., and Tucker, M. (1995). Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol. Biomarkers Prev. 4: 169-173.
Tambor, E., Rimer, B., and Strigo, T. (1997). Genetic testing for breast cancer susceptibility: Awareness and interest among women in the general population. Am. J. Med. Genet. 68: 43-49.
Vaeth, P. (1993). Women's knowledge about breast cancer. Am. J. Clin. Oncol. 16: 446-454.
Wroe, A., Salkovskis, P., and Rimes, K. (1998). The prospect of predictive testing for personal risk: Attitudes and decision making. Behav. Res. Ther. 36: 599-619.
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Donovan, K.A., Tucker, D.C. Knowledge About Genetic Risk for Breast Cancer and Perceptions of Genetic Testing in a Sociodemographically Diverse Sample. J Behav Med 23, 15–36 (2000). https://doi.org/10.1023/A:1005416203239
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DOI: https://doi.org/10.1023/A:1005416203239