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Genetic Counseling and Testing Service

Introduction

The University of Nebraska Medical Center (UNMC) operates a Hereditary Cancer Clinic that offers comprehensive cancer risk assessment, genetic counseling, pedigree analysis, and molecular testing for breast, ovarian, and colon cancer, as well as less common hereditary cancer syndromes. The clinic is staffed by a board-certified geneticist and a genetic counselor with referral to additional clinical specialties including oncology, gynecology, surgery, gastrointestinal, psychology, molecular biology, and nursing. The focus of the clinic is risk assessment, patient education, coordination in research protocols, and genetic testing when appropriate.

Location

Omaha, Nebraska

Chief, Hereditary Cancer Clinic

Warren Sanger, PhD
402.559.6800

Genetic Counselor, Hereditary Cancer Clinic

Gwen Reiser, MS, CGC
402.559.4161

UNMC offers cancer genetic counseling five days a week on-site and a satellite clinic held at the Clarkson Westin Omaha. Cancer genetic counseling services are also offered at three outreach clinics throughout the state four times a year: Scottsbluff, North Platte, Kearney.

UNMC provides a full range of genetic counseling, testing, screening, and research. The following tables set out the components of the comprehensive genetic testing program.

Intake Process

Community and Physician Awareness

UNMC's Hereditary Cancer Clinic provides education and resources for healthcare professionals and families. Education is offered through grand rounds, statewide conferences, and journal articles on the topic of cancer genetics for health professionals.

Patient Education

Patient education is available via direct clinical appointments as well as numerous cancer prevention programs offered to the public. A cancer hotline and family history Web site is also available to address questions regarding cancer genetics and counseling.

Identify Eligible Subjects/Referrals

Genetic counselors work to identify families at increased risk for cancer through the collection and interpretation of family histories. Cancer patients and their families are referred by physician or self-referred.

Risk Assessment and Pre-test Counseling

Genetic counseling is provided by a board-certified genetic counselor and medical geneticist. Both individuals have regional and national experience in the field of cancer genetics. Prior to the clinic appointment, patients are mailed a personal and family history form to complete and mail back. At the time of the clinic visit, the pedigree is reviewed and interpreted and a personalized risk assessment is provided.

If a hereditary cancer syndrome is identified and gene testing is available, a pre-test counseling session occurs. At this time, patients are counseled about cancer genes and their role in the development of cancer, implications for family members, as well as limitations, risks, and benefits of DNA testing.

Informed Consent Procedures

All molecular testing for cancer genetics requires the patient sign a standard informed consent form approved by the Institutional Review Board. Items covered include an explanation of the procedure and the potential risks and benefits of genetic testing. Genetic counseling is required prior to signing this document.

Testing

Confidentiality Standards

Documentation of the clinic appointment is filed in a hospital chart. The family pedigree and genetic test results are stored in a separate genetics file. All test results done in a research setting are stored in research files and are not part of the general medical record. Access to all genetic records is available only by written consent from the patient.

Testing

Genetic testing is coordinated through a number of laboratories that insure that families receive the best analysis currently available. Samples may be sent to outside laboratories such as Mayo Laboratories, Myriad Genetics Laboratories, or another university genetic testing laboratory.

Laboratory Quality Assurance

All results obtained from a research laboratory are confirmed by a CLIA certified laboratory when available. CAP/CLIA accreditation is current at all UNMC testing laboratories.

Available Testing at or Through UNMC

Cancer/Syndrome Gene

Breast & Ovarian Cancer BRCA1 & BRCA2

Hereditary Nonpolyposis Colorectal MLH1, MSH2 & PMS1 & PMS2
Cancer

Familial Adenomatous Polyposis APC

Li-Fraumeni p52

Melanoma p16

Multiple Endocrine Neoplasia RET

Prostate HPC1

Retinoblastoma RB

von Hippel-Lindau VHL

Cowden Syndrome PTEN

Test Result Interpretation

All test results are reviewed and interpreted by the medical geneticist and genetic counselor using resources such as laboratory's experience, published literature, and Internet mutation databases, when available.

Post-Test Counseling and Follow-Up

Post-test Counseling

UNMC cancer genetic counseling and testing protocols reflect National Society of Genetic Counselors Practice Guidelines in cancer genetics. Interpretation and communication of results are provided in-person at a post-test genetic counseling session. Counselors provide emotional support and resources for families with hereditary cancer.

Risk Management and Cancer Screening

If hereditary factors are identified or gene testing reveals an increased susceptibility to cancer, family members can then plan a personalized cancer prevention and screening program with their physician to diagnose cancer early and improve cancer management.

Medical and Surgical Management

Follow-up recommendations for screening and surveillance are provided to the patient in writing and to the referring physician if consent is provided. UNMC provides comprehensive services for cancer screening, including surgery, mammography, ultrasound, colonoscopy, etc.

Psychological and Supportive Services

Psychological counseling, support groups, and individual family contacts are offered to patients and families at UNMC. Referrals and contacts are made available at the initial clinic consultation.

Research

UNMC is involved in genetic research focusing on:

Improving Counseling Methods

Research studies are offered to families undergoing cancer gene testing to evaluate patients' experiences in the testing process. Patients are asked to complete a confidential questionnaire asking about perceived risk, mood, depression, and patient satisfaction.

Familial Registries

UNMC has a long history of coordination of the National Lymphoma Registry. Locally, UNMC is involved in a tumor registry.