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| Japanese Journal of Clinical Oncology | Page |
Letter
A Primer for Genetic Counseling of Hereditary Cancer - Visits to the Cancer Hospitals in the United States
To the Editor:
With the advance of molecular cytogenetics in the past decade, a number of responsible genes for hereditary cancers have been identified. We are now reaching a new horizon where a diagnosis of a high-risk carrier for developing cancer and a new strategy for cancer prevention are within the scope through genetic tests. The importance of genetic counseling is stressed and the genetic test should be considered as an option for the client having genetic counseling. However, there are only a few hospitals in Japan where genetic counseling for hereditary cancer is available, and subsequently we started a new clinic for genetic counseling and genetic testing of hereditary cancer in the National Cancer Center Hospital, Tokyo, from April, 1998. At this time, I had the opportunity to visit three cancer hospitals in the United States (Memorial Sloan-Kettering Cancer Institute, New York; Dana-Farber Cancer Institute, Boston; and MD Anderson Cancer Center, Houston) and observe genetic counseling sessions undertaken there. This is my brief report on what is now going on in the U.S. in this particular field of medicine.
In general, styles for genetic counseling are similar in these three cancer hospitals, but somewhat different depending on their own research activities. Numbers of clients visiting the clinic per week are about 10 to 20. The clients visit the clinic with complaints for various types of hereditary cancers such as breast/ovarian cancer syndrome, HNPCC, FAP and others, but the importance of hereditary breast/ovarian cancer syndrome should be emphasized. One in eight women in the U.S. develops breast and/or ovarian cancer before age 85 and 5 to 10% of them are estimated due to mutations of BRCA1 and 2 genes. Furthermore, ethnic predisposition is reported and the frequency of mutation carriers either in BRCA1 and 2 in Jewish women of Ashkenaji descent is estimated to be 1.2%, i.e. 10 times higher than those in non-Jewish U.S. women. As a result, more than half of the clients visiting the clinic are Jewish women. This is the case, particularly in New York, where Ashkenaji descents occupy a relatively high proportion of the population.
The first counseling session will take two hours under the coordination of a genetic counselor and a physician. The first halves of the sessions are held by genetic counselors. Their work includes taking precise disease histories of the clients and their relatives, explanations for the natural history of the disease and the modalities available for disease prevention and detection including genetic tests. Their explanations were quite similar in these three hospitals, showing that the genetic counseling was a well standardized clinical practice in the U.S. There are approximately 1100 genetic counselors in the U.S., of whom 8% are working in cancer genetic centers and 95% of them are female. A two-year training course in graduate school is required to be a genetic counselor. On average, 5 to 6 genetic counselors and 2 to 3 physicians are participating in the genetic counseling division. The cost for 2 hours of genetic counseling varies from US$200 to US$270 and the charge could be covered by the insurance as the counseling fee for the risk assessment.
The most popular genetic test for hereditary cancer is a screening panel of BRCA1 and 2 genes targeted to the 3 mutational hot spots, i.e. 185delAG and 5382insC for BRCA1 and 6174delT for BRCA2. The cost for the screening is US$450. If no mutations are found by this screening panel, full DNA sequencing is required. It costs as much as US$2400, so numbers of the examinees are limited due to financial reasons. The cost of the genetic test would also be covered by the insurance if they claim, however, most of the examinees would not use the insurance for the fear of discrimination. Indications for the genetic tests are explained precisely in the genetic counseling based on the empirical data, sometimes calculated according to the Bayesian estimation. Other genetic tests for HNPCC and so on are still performed for research purposes but are less frequent than those for BRCA1 and 2.
Many of the clients attending the counseling do not necessarily suffer from the known hereditary cancer. Therefore, the counseling should not be addressed only to the genetic aspects, but providing the comprehensive knowledge for cancer is also important. Professor Gordon B. Mills, Medical Director of Human Clinical Cancer Genetics at MD Anderson Cancer Center, said that the patients coming to the counseling wanted to know about cancer, but not genetics. Actually, the clinic is named breast/ovary risk assessment clinic at MD Anderson Cancer Center. The purpose of the clinic should be to reach out to all who have the fear of developing cancer and the support should be done not only through genetics but understanding of cancer and its prevention. Therefore, genetic counseling in cancer hospitals is evidently a part of the routine activity for medical and surgical oncologists. What impressed me most on this visit might be a plain conclusion that hereditary cancer is not a special disease but should be considered in the context of clinical oncology.
This visit was supported by a Grant-in-Aid for the 2nd Term Comprehensive 10-Year Strategy for Cancer Control from the Ministry of Health and Welfare, Japan.
Kokichi Sugano
Division of Clinical Laboratory
National Cancer Center Hospital, Tokyo
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Last modification: 8 Aug 1998
Copyright©Japanese Journal of Clinical Oncology, 1998.
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