Japanese Journal of Clinical Oncology

CANCER GENETIC COUNSELING AND PSYCHO-ONCOLOGY

The impact of genetics in cancer medicine has been marked in the three areas that define clinical cancer genetics: cancer genetic counseling, diagnostic cancer genetics and prognostic cancer genetics (1). Cancer genetic counseling has become popular owing to the recent development of genetic tests that pinpoint familial cancer risk. It is composed of presymptomatic risk assessment and management (cancer risk counseling) and reproductive risk counseling and the former has two components: risk assessment and counseling regarding behavioral, medical and surgical options to decrease risk. A basic goal of cancer risk counseling is to derive and explain an individual's cancer risk in clear terms and the counselor's role is to educate and enumerate options for patients and clinicians, answer questions regarding what is known and suggest appropriate referrals to help reach difficult decisions.

Genetic counselors who undergo genetic counseling are Master's degree-level health-care professionals with training in both psychosocial and medical aspects of inherited diseases. To become genetic counselors, in the USA people who have earned a Bachelor of arts or a bachelor of science degree from an accredited college or university must complete a 2-year graduate program leading to a Master of Science degree in human genetics and pass the American Board of Genetic Counseling (ABGC) certification examination. There are now approximately 1000 genetic counselors in the USA, but only 100 are cancer genetic counselors.

A cancer risk counseling session is comprised of the following components: (i) contracting and baseline risk perception, (ii) medical history and exposure history, (iii) pedigree construction and pedigree documentation, (iv) empirical risk assessment and genetic risk assessment, (v) options for early detection and prevention, (vi) options, risks and benefits for genetic testing and (vii) response to questions, support and plans for follow-up. Throughout these discussions, a sensitivity to psychological and ethical aspects of counseling is essential. Therefore, continued follow-up by the counselor after the session is the best way to limit the potential for adverse effects as a result of the knowledge of inherited cancer risk and ready access to liaison mental health professionals with experience in cancer genetics is thought to be a valued asset in cancer risk counseling.

Psycho-oncological research on aspects of cancer genetic counseling has focused on three broad areas: factors predicting interest in cancer genetic testing (2), the psychological impact and effect of genetic counseling and testing for inherited cancer risk (3) and the relationship between psychological distress and preventive behaviors (4). In each of these areas, the results have implications for the management of at-risk individuals. However, it is difficult for these data to be applicable to every case, because there are cultural differences in populations studied and the complexity of the instruments used in research studies and most of these studies have been performed for hereditary breast cancer.

At the Memorial Sloan-Kettering Cancer Center (MSKCC) and the Strang Cancer Prevention Center, institutional review board (IRB)-approved protocol studies entitled `Impact of genetic counseling and testing for breast cancer' and `Intervention for women at genetic risk for breast cancer', respectively, are now ongoing. The former study consists of three consecutive studies, (i) cross-sectional study and (ii) longitudinal evaluations. Its overall aim is to demonstrate the psychological effects of genetic counseling and the additional psychological impact of genetic testing as it is introduced into clinical counseling approaches. Subjects are selected from the patient population of the Special Surveillance Breast Program at MSKCC, the patient population of the Breast Examination Center of Harlem and patients referred to the Clinical Genetics Service at MSKCC and are followed for 12 months after the genetic test results notification. The latter study consists of a randomized controlled trial to test intervention that is designed to improve the quality of life and increase adherence to the methods of early detection for breast cancer in women at risk due to their family histories. Subjects are selected from the patient population of the Strang Cancer Prevention Center and the subjects in both the experimental (standard care plus a 6-week intervention) and control (standard care) groups are followed for 12 months.

Considering the above clinical and research methods in the USA, the following problems should be examined regarding genetic counseling and psycho-oncology research in Japan: (i) defining a distinction between genetic counseling and psychological counseling, (ii) development of a cancer genetic counseling model, (iii) education of cancer genetic counselors, (iv) an offer of appropriate information concerning cancer genetics, (v) a method to recruit subjects at risk for cancer susceptibility and (vi) determination of the psycho-oncological research that is possible. While it is by no means easy to deal with these problems, it is essential that medical oncologists, surgical oncologists, psycho-oncologists, medical geneticists, nurses and all other staff involved in cancer care turn vigorously to this new area in collaboration with one another. To put it concretely, it would be ideal for a department of clinical cancer genetics which is comprised of the above members to be developed in cancer hospitals. However, it is difficult to develop such a new department quickly; therefore, any oncologist should be aware of cancer genetics including molecular genetics, pedigree construction and the ethical and legal complexities of genetic testing and be able to provide counseling regarding familial cancer risk and options for prevention and early detection. For this purpose, cancer specialists will need to be provided with educational opportunities on the methods of quantitative cancer risk assessment, genetic testing and pre- and post-test genetic counseling. Furthermore, it is extremely important to educate mental health-care providers including psychiatrists, psychologists and oncology nurses who have a knowledge of cancer genetics as well as oncology and support the counseling system.

Fortunately, three protocol studies on cancer genetic testing have recently been approved by the National Cancer Center's IRB: APC mutations for familial adenomatous polyposis (FAP), hMSH2 or hMLH1 mutations for hereditary nonpolyposis colon cancer (HNPCC) and RB mutations for retinoblastoma, and genetic counseling has started. Utilizing this research, we have started to plan a cross-sectional study to examine interest in genetic counseling and testing, perceived risk of developing cancer and emotional distress in individuals at risk for FAP and HNPCC.

References

1. Offit K. Clinical cancer genetics: risk counseling and management. New York: Wiley-Liss, 1998.

2. Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, et al. BRCA1 testing in families with hereditary breast-ovarian cancer. JAMA 1996;275:1885-92. MEDLINE Abstract

3. Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A, Hughes C, et al. Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 1997;89:148-57. MEDLINE Abstract

4. Kash KM, Holland JC, Halper MS, Miller DG. Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst 1992;84:24-30. MEDLINE Abstract

Hitoshi Okamura, M.D. Psycho-Oncology Division National Cancer Center Research Institute, East Kashiwa, Chiba

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