APPENDIX XII: BIBLIOGRAPHY OF MATERIALS FOR PATIENTS AND PROVIDERS

FACT SHEETS, ARTICLES, BROCHURES AND PAMPHLETS

Genetic Counseling (1994) March of Dimes Birth Defects Foundation. Call: 1-800-367-6630 or fax: 717-825-1987.

Understanding the Genetics of Breast Cancer for Jewish Women (1997) American Jewish Congress and Hadassah. Contact: Lois Waldman, American Jewish Congress Commission for Women's Equality at (212) 360-1548.

Genetic Testing for Breast Cancer Risk: It's Your Choice (1997) National Action Plan on Breast Cancer and National Cancer Institute. Contact: NAPBC, US Public Health Service's Office on Women's Health, US Department of Health and Human Services, 200 Independence Avenue, SW, Room 718F, Washington, DC 20201; or by E-mail at http://www.napbc.org.

Understanding Gene Testing (1995) National Cancer Institute, NIH Publication No. 96-3905. Call 1-800-4-CANCER.

Questions and Answers about Estimating Cancer Risk in Ashkenazi Jews (1997) National Cancer Institute. Call 1-800-4-CANCER.

Three breast cancer gene alterations in the Jewish community carry increased risk, but lower than in previous studies (1997) National Cancer Institute. Call 1-800-4-CANCER.

BRCA1 Breast Cancer Susceptibility Gene (1995) and Breast Cancer Risk (1996). Available from the American Cancer Society. Call 1-800-ACS-2345; fax: (404) 329-7530.

Breast Cancer and the BRCA1 Gene: Questions and Answers (1995). Call the National Cancer Institute at 1-800-4-CANCER; or fax: (301) 496-6792.

BOOKS

R Londer Gould in consultation with H Lynch, MD, RA Smith and JF McCarthy (1997) Cancer and Genetics: Answering Your Patients' Questions - A Manual for Clinicians American Cancer Society and PRR, Inc. For single copies, contact the American Cancer Society at 800-ACS-2345; for bulk quantities, contact PRR, Inc. at 516-424-8900.

K Offit Clinical Cancer Genetics: Risk Counseling and Management; Wiley, 1997.

KA Schneider: Counseling about Cancer: Strategies for Genetic Counselors (1994). Available from the author at: Division of Cancer Epidemiology and Control, Dana-Farber Cancer Institute, 44 Binney Street, Boston, MA 02115.

N Sharpe: In Control, Making the Most of the Genetic Test for Breast Cancer; Prentice Hall, 1997.

Vogelstein B and Kinzler KW. The Genetics of Cancer; McGraw-Hill Co, Columbus, OH, 1997.

Reiser GM and Schaefer GB: Cancer Genetics: A Guide for Counseling Families.
The Media Center, Meyer Rehabilitation Institute, University of Nebraska Medical Center.

Weber W, Mulvihill J and Narod S (Eds) Familial Cancer Management; CRC Press, Boca Raton, FL 1996.

Ponder BAJ, Cavenee WK, and Solomon E (Eds). Genetics and Cancer: A Second Look (1995). Cold Spring Harbor Laboratory Press, 1995.

VIDEOTAPES

Genetic Testing for Cancer Risk: It's Your Choice (videotape) National Action Plan on Breast Cancer (1997). Contact: NAPBC, US Public Health Service's Office on Women's Health, US Department of Health and Human Services, 200 Independence Avenue, SW, Room 718F, Washington, DC 20201; phone: 202-401-9587, or E-mail at http://www.napbc.org.

CURRICULUM OUTLINE

"Hereditary Susceptibility to Breast and Ovarian Cancer: An Outline of the Basic Fundamental Knowledge Needed by All Health Care Professionals" (Endorsed by the American Society of Clinical Oncology). Find it on the National Action Plan for Breast Cancer Website at http://www.napbc.org/napbc.hsedcurr.htm.

WEBSITES

http://www.cancergenetics.org

SOFTWARE

Scientists at the National Cancer Institute and the National Surgical Adjuvant Breast and Bowel Project Biostatistics Center have developed a software application called the Breast Cancer Risk Assessment Tool. This is a pilot interactive computer tool, available on disk, which allows users to learn more about and to calculate individual breast cancer risk. To order a free copy, call 1-800-4-CANCER and select the prompt for publications.