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City of Hope Comprehensive Cancer Center
Duarte, CA (Los Angeles)
800.826.4673
www.cityofhope.org

Genetic Counseling and Testing Service

In light of a growing body of research confirming that many common cancers, including breast, ovarian, and colorectal cancer, are hereditary, City of Hope's Cancer Screening & Prevention ProgramSM (CSPP) helps people understand their personal cancer risk profiles, offering a comprehensive cancer risk assessment that takes into account family history and genetics, along with environmental and lifestyle factors. With this information, people can take proactive steps to "outsmart cancer.' Following this assessment, the program provides concrete steps one can take to mitigate these risks and prevent cancer from developing.

Location Duarte (Pasadena/Los Angeles area), California
Contact For more information or to schedule a consultation, call 626.256.8662, ext. 2

Intake Process

Community and Physician Awareness The Clinical Cancer Genetics Education Program (CCGEP) at City of Hope delivers state-of-the-art information on cancer genetics and its applications to physicians, health-care professionals and the public through a series of educational courses, workshops, seminars and an interactive electronic communications network. The goal of the CCGEP is to increase awareness of hereditary forms of cancer and to ensure the responsible use of genetic predisposition testing, incorporating attention to the medical, ethical and legal issues that may impact the quality of life of individuals seeking information or testing. Education for health professionals is delivered in the form of lectures, workshops and seminars in the format of established continuing medical education (CME) activities (e.g. grand rounds, clinical practice guideline working groups, etc.) at regional health centers, special all day seminars at the City of Hope with additional invited faculty of national prominence and at the CCGEP Web site www.cityofhope.org/ccgp.
Identify Eligible Subjects/Referral

The strongest candidates for genetic counseling and testing are in families where cancer occurs at a much younger age than average; cancer occurs in more than one generation; there are multiple cancers in one family member; cancer occurs in both breasts, with one before age 55; breast cancer occurs in a man; cancer occurs in several close relatives; and several rare cancers occur in a family.

Any of these key features in an individual or family are indications for referral to the CSPP. The National Comprehensive Cancer Network guidelines for referral are generally followed.

Pre-test Counseling and Risk Assessment City of Hope's program offers a comprehensive cancer risk assessment that focuses on family history and genetics, along with personal and environmental factors to help determine an individual's risk of developing several types of cancer and guide risk management. Based on analysis of these factors, genetic testing may or may not be recommended. Prior to the first visit, information about personal health, reproductive history, health habits, lifestyle, environmental exposures and family cancer history is obtained. At the first visit we review the information to determine personal and family cancer risks, discuss cancer patterns, genetic principles and strategies to prevent cancer from occurring. If appropriate, the benefits and limitations of genetic testing will also be discussed to help individuals make an informed choice regarding genetic testing. If testing is pursued, the test results and cancer risk management is discussed in detail at a subsequent visit.
Informed Consent Procedures A standard Institutional Review Board (IRB) approved written informed consent is obtained for participation in all clinical cancer genetics activities.

Testing

Confidentiality Standards Fully Health Insurance Portability and Accountability Act (HIPAA) compliant. Research confidentiality is maintained by assigning all patients a unique patient identifier. All patient information is kept in secure files separate from the clinic. Access to patient information is limited to CSPP staff directly involved with the patient. Written authorization/permission from the patient is required for release of any information. A Certificate of Confidentiality from the National Cancer Institute was obtained to protect the privacy of individuals participating in CSPP genetic research.
Testing The City of Hope Molecular Diagnostic Laboratory (CMDL) is available for microsatellite instability tumor analysis and direct genetic sequence analysis of the MLH1, MSH2 and MSH6 genes associated with hereditary nonpolyposis colorectal cancer (HNPCC), the CDH1 gene associated with diffuse hereditary gastric cancer, and complete sequencing of p53 and CHEK2. Outside vendors are used where appropriate (e.g., for BRCA analysis). Test results from commercial vendors obtained in the course of clinical services are included in the medical record only with the permission of the patient. Call 888.826.4362 for more information regarding test services.
Available Testing at or through City of Hope
Cancer/Syndrome Gene
Ataxia – Telangectasia ATM
Breast and Ovarian Cancer BRCA1 and BRCA2
Familial Adenomatous Polyposis Colon Cancer APC/MYH
Hereditary Nonpolyposis Colon Cancer MLH, MSH2, MSH6, PMS2
Li-Fraumeni p53
Familial Melanoma p16, CDKN4
Multiple Endocrine Neoplasias MEN1, MEN2, RET
Neurofibromatosis Type 1 NF1
Neurofibromatosis Type 2 NF2
Familial Prostate
Retinoblastoma RB1
Von-Hippel-Lindau VHL
Cowden's disease PTEN
Test Result Interpretation The CSPP clinicians (oncologist/geneticist and genetic cancer risk counselors) interpret all genetic test results taking into account the patient's over-all cancer risk assessment, including personal and family history, and the published literature and database repositories (through the Internet and other resources). Cancer risks conferred by a specific gene mutation are estimated incorporating the above data for each individual and an appropriate risk management plan is then determined.

Post-test Counseling and Follow-Up

Post-test Counseling All test results are reported to the individual tested in person in a follow-up consultation. The program staff and other members of the City of Hope community offer psychological and social support to help individuals and families sort through their feelings about the test results and risk management options. Implications of the test results for other family members is discussed. Family members may be seen for genetic counseling and testing services.
Cancer Screening The CSPP clinicians discuss appropriate cancer surveillance practices with all individuals.
Medical and Surgical Management Recommendations and options are provided for medical (e.g., chemoprevention) and surgical cancer risk management.

Research

City of Hope, through clinical research in the comprehensive cancer center and scientific research through Beckman Research Institute, have been actively involved in genetic research for more than 50 years. The CSPP provides a valuable resource for investigators to translate research findings into medical practices for cancer prevention and control. Genetic, behavioral and outcomes studies, including long-term follow-up and clinical investigations for prevention or early detection of cancer, are available through the CSPP.

Research Type Study
Identifying new genes Modifier genes and gene-gene interactions
Improving counseling methods Studies related to concerns, motivations and health behavior of persons seeking cancer risk genetic counseling
Improving testing methods Clinical Cancer Genetics and CMDL – critical methods development for analysis of complex genes (e.g., ATM)
Implementing chemoprevention trials A GNRHA study is expected to be open soon. NSABP-P2 trial is active. Idoxifene trial is planned
Discovering clinical treatments for genetic disorders Chemoprevention studies are currently active for women at high risk for breast cancer
Tracking long-term results of prophylactic surgeries, medical surveillance choices and preventive interventions IRB-approved confidential registry and genetic testing protocol allows outcome tracking
Participating in familial registries or national registries A computerized database contains a registry of consenting patients and family members to link timely medical interventions with persons who have a genetic and/or environmental susceptibility to cancer
Studying impact of receiving genetic information on health-related outcomes Ongoing impact, decisions, and outcomes registry

Other Components of Genetic Services

Quality assurance Evaluation of patient satisfaction with the information received and the informed consent process is ongoing.
Training The department's CCGEP is a multifaceted cancer genetics educational initiative including comprehensive clinical and didactic training for cancer genetics practitioners and research program leaders through clinical internships, intensive clinical training program, a CME-accredited interdisciplinary CCG Working Group and a multidisciplinary post-graduate career development program.