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Suggested Citation:"References." Institute of Medicine. 2007. Cancer-Related Genetic Testing and Counseling: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/11971.
Page 117
Suggested Citation:"References." Institute of Medicine. 2007. Cancer-Related Genetic Testing and Counseling: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/11971.
Page 118
Suggested Citation:"References." Institute of Medicine. 2007. Cancer-Related Genetic Testing and Counseling: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/11971.
Page 119
Suggested Citation:"References." Institute of Medicine. 2007. Cancer-Related Genetic Testing and Counseling: Workshop Proceedings. Washington, DC: The National Academies Press. doi: 10.17226/11971.
Page 120

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118 cancer-RELATED GENETIC TESTING AND COUNSELING Freedman, A. N., L. Wideroff, L. Olson, W. Davis, C. Klabunde, K. P. Srinath, B. B. Reeve, R. T. Croyle, and R. Ballard-Barbash. 2003. US physicians’ attitudes towards genetic testing for cancer susceptibility. American Journal of Medical Genetics, A 120(1):63-71. Frost, M. H., D. J. Schaid, T. A. Sellers, J. M. Slezak, P. G. Arnold, J. E. Woods, P. M. Petty, J. L. Johnson, D. L. Sitta, S. K. McDonnell, T. A. Rummans, R. B. Jenkins, J. A. Sloan, and L. C. Hartmann. 2000. Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. Journal of the American Medical Association 284(3):319-324. Frost, M. H., J. M. Slezak, N. V. Tran, C. I. Williams, J. L. Johnson, J. E. Woods, P. M. Petty, J. H. Donohue, C. S. Grant, J. A. Sloan, T. A. Sellers, and L. C. Hartmann. 2005. Satisfaction after contralateral prophylactic mastectomy: The significance of mastectomy type, reconstructive complications, and body appearance. Journal of Clinical Oncology 23(310):7849-7856. Genetic testing for breast and ovarian cancer susceptibility: Evaluating direct-to-consumer marketing—Atlanta, Denver, Raleigh-Durham, and Seattle, 2003. 2004. Morbidity and Mortality Weekly Report, 53:603-606. Graves, K. D., B. N. Peshkin, C. H. Halbert, T. D. Demarco, C. Isaacs, and M. D. Schwartz. 2006. Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors. Breast Cancer Research and Treatment Oct 26 Epub. http://www. (accessed July 27, 2007). Hadley, D. W., J. F. Jenkins, E. Dimond, M. de Carvalho, I. Kirsch, and C. G. Palmer. 2004. Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer. Journal of Clinical Oncology 22(1):39-44. Halbert, C., H. Lynch, J. Lynch, D. Main, S. Kucharski, A. K. Rustgi, and C. Lerman. 2004. Colon cancer screening practices following genetic testing for hereditary nonpolyposis colon cancer (HNPCC) mutations. Archives of Internal Medicine 164(17):1881-1887. Halbert, C., K. Brewster, A. Collier, C. Smith, L. Kessler, B. Weathers, J. E. Stopfer, S. Comchek, and E. P. Wileyto. 2005. Recruiting African American women to participate in hereditary breast cancer research. Journal of Clinical Oncology 23(31):7967-7973. Hudson, K., J. Murphy, D. Kaufman, G. Javitt, S. Katsanis, and J. Scott. 2006. Oversight of U.S. genetic testing laboratories. Nature and Biotechnology 24(9):1083-1090. Hughes, C., S. K. Peterson, A. Ramirez, K. J. Gallion, P. G. McDonald, C. S. Skinner, and D. Bowen. 2004. Minority recruitment in hereditary breast cancer research. Cancer Epidemiology Biomarkers and Prevention 13(7):1146-1155. Jarvinen, H. J., J. P. Mecklin, and P. Sistonen. 1995. Screening reduces colorectal cancer rate in families with hereditary nonpolyposis colorectal cancer. Gastroenterology 108(5):1590-1592. Kelly, K. M., and K. Sweet. 2007. In search of a familial cancer risk assessment tool. Clinical Genetics 71(1):76-83. Korf, B. R., G. Feldman, and G. L. Wiesner. ������������������������������������������ 2005. Report of Banbury Summit meeting on training of physicians in medical genetics, October 20-22, 2004. Genetics in Medicine 7(5):433-436. Lehmann, A. 1997. Aspects psychologiques du conseil genetique (Psychological aspects of genetic counseling). In Oncogenetique: vers une medicine de presumption/prediction, edited by J.-Y. Bignon. Cachan, France: Lavoisier. Pp. 383-395.

REFERENCES 119 Lerman, C., C. Hughes, R. T. Croyle, D. Main, C. Durham, C. Shyder, A. Bonney, J. F. Lynch, S. A. Narod, and H. T. Lynch. 2000. Prophlactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Preventative Medicine 31(1):75-80. MacDonald, D. J., S. Sand, F. Kass, K. R. Blazer, J. Congleton, J. Craig, and J. N. Weitzel. 2006. The power of partnership: Extending comprehensive cancer center expertise in clinical cancer genetics to community breast care centers. Seminars in Breast Disease 9:39-47. Meiser, B., V. Collins, R. Warren, C. Gaff, D. J. St John, M. A. Young, K. Harrop, J. Brown, and J. Halliday. 2004. Psychological impact of genetic testing for hereditary non- polyposis colorectal cancer. Clinical Genetics 66(6):502-511. Metcalfe, K., H. T. Lynch, P. Ghadirian, N. Tung, I. Olivotto, E. Warner, O. I. Olopade, A. Eisen, B. Weber, J. McLennan, P. Sun, W. D. Foulkes, and S. A. Narod. 2004. Contralateral breast cancer in BRCA1 and BRCA2 mutation carriers. Journal of Clinical Oncology 22(12):2328-2335. Metcalfe, K., H. T. Lynch, P. Ghadirian, N. Tung, I. A. Olivotto, W. D. Foulkes, E. Warner, O. Olopade, A. Eisen, B. Weber, J. McLennan, P. Sun, and S. A. Narod. 2005. The risk of ovarian cancer after breast cancer in BRCA1 and BRCA2 carriers. Gynecologic Oncology 96(1):222-226. Mouchawar, J., D. Laurion, D. P. Ritzwoller, J. Ellis, A. Kulchak-Rahm, and S. Hensley- Alford. 2005. Assessing controversial direct-to-consumer advertising for hereditary ���������������������������������������������������������������������������� breast cancer testing: Reactions from women and their physicians in a managed care organization. American Journal of Managed Care 11(10):601-608. Peshkin, B. N., M. D. Schwartz, C. Isaacs, C. Hughes, D. Main, and C. Lerman. 2002. Utilization of breast cancer screening in a clinically based sample of women after BRCA1/2 testing. Cancer Epidemiology Biomarkers and Prevention 11(10 Pt 1):1115-1118. Ricker, C., V. Lagos, N. Feldman, S. Hiyama, S. Fuentes, V. Kumar, K. Gonzalez, M. Palomares, K. Blazer, K. Lowstuter, D. MacDonald, and J. Weitzel. ������������������ 2006. If we build it…will they come? Establishing a cancer genetics services clinic for an underserved predominantly Latino cohort. Genetic Counseling 15(6):505-514. Ricker, C. N., S. Hiyama, S. Fuentes, N. Feldman, V. Kumar, G.C. Uman, R. Nedelcu, K. R. Blazer, D. J. MacDonald, and J. N. Weitzel. ������������������������������������������ 2007. Beliefs and interest in cancer risk in an underserved Latino cohort. Preventative Medicine 44(3):241-245. Riegert-Johnson, D. L., B. R. Korf, R. L. Alfortd, M. I. Broder, and B. J. Keats. �������������� 2004. Outline of a medical genetics curriculum for internal medicine residency training programs. Genetics Medicine 6(6):543-547. Schwartz, M. D., B. N. Peshkin, C. Hughes, D. Main, C. Isaacs, and C. Lerman. 2002. Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. Journal of Clinical Oncology 20(2):514-520. Schwartz, M. D., E. Kaufman, B. N. Peshkin, C. Isaacs, C. Hughes, T. DeMarco, C. Finch, and C. Lerman. 2003. Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/2 mutation testing. Journal of Clinical Oncology 21(21):4034-4041.

120 cancer-RELATED GENETIC TESTING AND COUNSELING Schwartz, M. D., C. Lerman, B. Brogan, B. N. Peshkin, C. H. Halbert, T. DeMarco, W. Lawrence, D. Main, C. Finch, C. Magnant, M. Pennanen, T. Tsangaris, S. Willey, and C. Isaacs. 2004. Impact of BRCA1/BRCA2 counseling and testing on newly diagnosed breast cancer patients. Journal of Clinical Oncology 22(10):1823-1829. Tercyak, K. P., C. Lerman, B. N. Peshkin, C. Hughes, D. Main, C. Issaacs, and M. D. Schwartz. �������������������������������������������������������������������������� 2001. Effects of coping style and BRCA1 and BRCA2 test results on anxiety �������������������������������������������������������������������� among women participating in genetic counseling and testing for breast and ovarian cancer risk. Health and Psychology 20(3):217-222. Van Oostrom, I., H. Meijers-Heijboer, L. N. Lodder, H. J. Duivenvoorden, A. R. van Gool, C. Seynaeve, C. A. van der Meer, J. G. Kiijn, B. N. van Geel, C. W. Burger, J. S. Wiadimiroff, and A. Tibben. 2003. Long term psychological impact of carrying ������������������������������������������������� a BRCA1/2 mutation and prophylactic surgery: A 5-year follow-up study. Journal of Clinical Oncology 21(20):3867-3874. Warner, E., D. B. Plewes, K. A. Hill, P. A. Causer, J. T. Zubovits, R. A. Jong, M. R. Cutrara, G. DeBoer, M. J. Yaffe, S. J. Messner, W. S. Meschino, C. A. Piron, and S. A. Narod. 2004. Surveillance of BRCA1 and BRCA2 mutation carriers with magnetic resonance imaging, ultrasound, mammography, and clinical breast examination. Journal of the American Medical Association 292(11):1368-1370. Weitzel, J. N., M. Robson, B. Pasini, S. Manoukian, D. Stoppa-Lyonnet, H. Lynch, J. McLennan, W. Foulkes, T. Wagner, N. Tung, P. Ghadirian, O. Olopade, C. Isaacs, C. Kim-Sing, P. Moller, S. Neuhausen, K. Metcalfe, P. Sun, and S. Narod. 2005a. A comparison of bilateral breast cancers in BRCA carriers. Cancer Epidemiology Biomarkers and Prevention 14(6):1-5. Weitzel, J. N., V. Lagos, K. R. Blazer, R. Nelson, C. Ricker, J. Herzog, C. McGuire, and S. Neuhausen. 2005b. Presence of BRCA mutations and founder effect in high-risk ������������������������������������������������������������������ Hispanic families. Cancer Epidemiology Biomarkers and Preventioin 14(7):1-6. Weitzel, J., S. S. Buys, W. Sherman, A. Daniels, G. Ursin, J. R. Daniels, D. A. MacDonald, K. R. Blazer, M. Pike, and D. V. Spicer. 2007. Reduced mammographic density with use of a gonadotrophin releasing hormone agonist-based chemoprevention regimen in BRCA1 carriers. Clinical Cancer Research 13(2 Pt 1):654-658. Wideroff, L., A. N. Freedman, L. Olson, C. N. Klabunde, W. Davis, K. P. Srinath, R. T. Croyle, and R. Ballard-Barbash. 2003a. Physician use of genetic testing for cancer susceptibility results of a national survey. Cancer Epidemiology Biomarkers and Prevention 12(4):295-303. Wideroff, L., S. T. Vadaparampil, N. Breen, R. T. Croyle, and A. N. Freedman. 2003b. Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Community Genetics 6(3):147-156. Wideroff, L., S. T. Vadaparampil, M. H. Greene, S. Taplin, L. Olson, and A. N. Freedman. 2005. Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of US physicians. Journal of Medical Genetics 42(10):749-755.

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These proceedings of a workshop presented to the Institute of Medicine's (IOM) National Cancer Policy Forum on March 30, 2007, are the result of forum discussions about genetic testing and counseling at its meetings on June 16 and October 30, 2006. Those discussions, led by forum members Betty Ferrell and Patricia Ganz, noted that genetic testing and counseling are becoming more complex and important for informing patients and families of risks and benefits of certain courses of action, and yet organized expert programs are in short supply.

The subject matter involves not only the scientific and clinical aspects but also workforce and reimbursement issues, among others. Drs. Ferrell and Ganz proposed that the forum could provide a useful review of the various important implications of these issues by holding and reporting a workshop on the subject. They volunteered to work with staff to organize and lead such a workshop. The agenda for the workshop is reproduced in the appendix to these proceedings. It includes the presentations of the invited speakers and the comments of speakers, forum members, and others in attendance as transcribed and edited to eliminate redundancies, grammatical errors, and otherwise make them more readable. Cancer-Related Genetic Testing and Counseling : Workshop Proceedings summarizes the workshop.


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