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Moffitt Cancer Center
Tampa, Florida
800.456.3434 (888.MOFFITT)
www.moffitt.org

Genetic Counseling and Testing Service

Introduction

Cancer genetic counseling and testing services are offered through the Moffitt Cancer Center Screening and Prevention. Comprehensive genetic services are offered to individuals with cancer and their family members, and to individuals with a family history of cancer. The goals of the service are pre-symptomatic risk assessment and management, diagnostic evaluation, education, genetic testing, the multidisciplinary coordination of health care, and access to appropriate research protocols. Genetic counseling is provided by board-certified/eligible genetic specialists with experience in cancer genetics. A multidisciplinary team reviews each genetic testing case and includes physicians who are board-certified in oncology, surgery, clinical genetics, and molecular genetics; the director of the Psychosocial Oncology Program; and board-certified oncology nurse practitioners and genetic counselors.

Location

Tampa, Florida

Faculty and Staff

Tuya Pal, MD, FABMG

Jennifer Brzosowicz, MS, CGC

Meghan Caldwell MS, CGC

813.745.6769

Appointment Scheduling

813.745.6769

The following tables delineate the components of the Genetic Risk Assessment Service (GRAS) at the Moffitt Cancer Center.

Intake Process

Community and Physician Awareness

GRAS staff offers continuing medical education for community physicians and nurses. Topics include identification of individuals at risk for inherited cancer susceptibility, updates on cancer genetics, and genetic counseling. Bi-monthly case teleconferences are offered to regional and national healthcare providers.

Patient Education

Clients receive education aimed at conveying basic genetic concepts and the relationship between genes and cancer.  GRAS has developed a variety of patient education materials to supplement the one-to-one counseling sessions.

Referral

Practitioners throughout the region and beyond may access the GRAS through the intake phone lines or through the Cancer Answer Line at 888.MOFFITT (888-663-3488). Nurse educators trained in the intake process for cancer genetics staff the 800 number and refer appropriate clients to the GRAS. The GRAS staff members participate in the cancer program meetings, helping to identify appropriate patients for genetic counseling referral. A programmatic referral process through the treating physician is in place for patients with a history suggestive of inherited breast cancer, ovarian cancer, colon cancer or melanoma. Individuals throughout the region also self-refer by contacting the program.

Identify Eligible Subjects

In order to address the needs of individuals with inherited cancer susceptibility for whom genetic testing is available, the staff of the GRAS  regularly collaborate with the Breast Program, Gynecologic Oncology Program, Cutaneous Oncology Program, Gastrointestinal Oncology Program, and the Adolescent and Young Adult Cancer Program. Individuals whose histories are suggestive of inherited cancer susceptibility are identified for referral to GRAS.

Pre-test Counseling and Risk Assessment

Comprehensive risk evaluation targeted to the client's main concerns is accomplished via extensive pre-session preparation. Typically, questionnaires are mailed to clients prior to appointments to assess personal and family history. Clients are encouraged to consult family members and records in the process of filling out the information and to bring family members to the counseling sessions, if desired. Based on questionnaire information, a genetic counselor creates a computer-generated pedigree and begins the evaluation of cancer risk using appropriate empiric and analytic models, as warranted by the history. This is supplemented by any additional information acquired during the pre-test genetic counseling session. During this session, which is conducted with a board-certified/eligible genetic counselor, the client is assisted in understanding the genetic basis of cancer and the interaction of genes and other factors in cancer causation.

A wide variety of information is discussed, including:

  • The client's personal risk factors and behaviors thought to affect risk
  • The individual's perception of cancer risk
  • Options regarding genetic testing
  • Risks and benefits of testing, including psychological effects on the individual and impact on family relationships
  • The possibility of discrimination in insurance or employment
  • Test eligibility
  • The test procedure itself
  • The implications of a positive, negative, or indeterminate test result on medical decisions
  • Screening or prophylactic surgery options
  • Sharing the results with family members
After the pre-test genetic counseling session, each client receives a confidential letter reviewing the information and recommendations that were discussed.

Informed Consent Procedures

All testing for cancer susceptibility genes requires both an informed consent process (achieved through the pre-test genetic counseling session).

Testing

Confidentiality Standards

The record of each client of GRAS is maintained in an electronic folder in the Cancer Center’s Electronic Medical Record which is only released as specified in the Institution’s Notice of Privacy Practices.

Testing

After the pre-test counseling session, the client's information is reviewed by a board-certified clinical geneticist who recommends the most appropriate testing for the client. These genetic tests are performed by either licensed commercial laboratories or institutional labs with CAP/CLIA certification.

Available Testing at or Through
H. Lee Moffitt Cancer Center

Cancer/Syndrome Gene

Breast and Ovarian Cancer BRCA1 & BRCA2

Familial Adenomatous Polyposis (Attenuated) APC & APC I1307K

Hereditary Nonpolyposis Colon Cancer MSH2 & MLH1

Li-Fraumeni Syndrome p53

Malignant Melanoma P16/CDK4

Multiple Endocrine Neoplasia 1 MEN1

Multiple Endocrine Neoplasia 2 & Familial Medullary

Thyroid Carcinoma RET

Neurofibromatosis 1 NF1

von Hippel-Lindau VHL

Cowden Syndrome PTEN

Laboratory Quality Assurance

Only CAP/CLIA-approved laboratories are used.

Test Result Interpretation

All genetic test results are interpreted by a board-certified/eligible clinical geneticist in light of the client's overall health risk assessment, including personal and family history, the published literature, and database repositories of mutations (through the Internet and other resources). The risk conveyed by a specific mutation is estimated based on all the above data for each individual's case.

Post-Test Counseling and Follow-Up

Post-test Counseling

The results of the genetic testing and interpretation of results are communicated to the client in a face-to-face counseling session with a board-certified geneticist. The information presented includes the medical surveillance and management recommendations of the multidisciplinary review board. A summary is provided to the client after the session to review the information and recommendations that were presented. Arrangements are facilitated with other cancer genetics clinics for family members seeking counseling at locations outside Moffitt Cancer Center.

Cancer Screening

The multidisciplinary review board recommends evidence-based surveillance strategies and addresses periodicity of exams and imaging modalities and use of serologic markers. Screening for early detection of breast, ovarian, colon, prostate, skin, and other cancers is discussed with clients as appropriate. Syndrome-specific recommendations are issued as appropriate.

Medical and Surgical Management

In addition to the written summary of recommendations that is provided to each client, a referral to a member of the high-risk medical oncology team is provided to clients as desired for discussion of the appropriate individualized medical management options. Follow-up care recommendations may also be issued in writing to the client's referring or other health care provider, at the client's request. These recommendations describe the cancer risk assessment and recommend alterations in lifestyle and type and frequency of screening tests. The results of genetic testing are not specifically mentioned without explicit written consent from the client. Referrals for surgical, gynecologic, dermatologic, medical oncology, and other medical services are implemented in a syndrome- and client-specific fashion.

Psychological and Supportive Services

Each client who undergoes pre-test counseling meets with a board-certified/eligible genetic counselor with experience in cancer genetics. A formal psychological screening tool is used for each client, in conjunction with the subjective assessment of the genetic counselor, to determine the need for psychological counseling (this occurs prior to any testing). If any issues of concern are identified, approval by the psychologist is required prior to proceeding with testing. Referral to the psychologist and other support personnel is available to all clients.

Research

Most aspects of genetic risk assessment and testing for cancer susceptibility syndromes warrant evaluation for research protocols as standards of care are being defined. Appropriate referrals are made for such studies at Moffitt and outside the institution.

Implementing Chemoprevention Trials

Several chemoprevention trials, both multi-institutional and Moffitt-based, are being conducted or implemented.

Participating in Familial Registries

The ICARE Inherited Cancer Registry at the Moffitt Cancer Center is a registry-based research study and represents a clinical-research-community partnership among medical practitioners, researchers and members of the general population. ICARE maintains a registry of individuals interested in participating in studies about inherited cancer. The registry is also designed to improve access to cancer genetics expertise to patients and healthcare providers through education, outreach, and research.

Quality Assurance

The GRAS is sponsored by Moffitt Cancer Center and thus is subject to its quality control procedures. The risk information, testing eligibility, and recommendations provided to each client are reviewed independently by a genetic counselor and clinical geneticist prior to being provided in writing to the client. GRAS participates in the National Society of Cancer Genetic Counselors List serve, which provides a forum for anonymous peer review and discussion of cases with regard to risk assessment and recommendations.

Training

GRAS offers a variety of clinical training opportunities for staff of regional affiliate institutions in the identification of individuals for whom genetic counseling referral is appropriate, including Genetic Counseling student training, residency training, and medical oncology surgical fellows.