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Genetic Counseling and Testing Service

Introduction

Huntsman Cancer Institute offers genetic counseling services through fee-for-service and research clinics to those who have a personal or family history of cancer. Clients can consult specialty physicians and genetic counselors for genetic risk assessment, counseling, and testing in the Family Cancer Assessment Clinic. The current focus includes breast/ovarian, colon, pancreas, paraganglioma, pediatric cancers, and melanoma. Eligible individuals are referred on to appropriate resource studies.

Location

2000 Circle of Hope

Salt Lake City, Utah 84112

Family Cancer Assessment Clinic

To schedule appointments

Saundra S. Buys, MD; Randall Burt, MD; Jewel Samadder, MD; Joshua Schiffman, MD; Sancy Leachman, MD, PhD; Douglas Adler, MD

801.587.9555

Huntsman Cancer Institute provides a full range of genetic counseling, testing, screening, and research. The following sections outline the components of the comprehensive genetic testing program.

Intake Process

Physician and Community Awareness

Huntsman Cancer Institute (HCI) publishes several newsletters that address cancer genetics topics, including inherited breast, colon, and pancreas cancer and melanoma. In addition, the physicians and genetic counselors associated with the clinics conduct in-services, grand rounds, and presentations in other professional forums.

HCI's Cancer Learning Center offers patients and the general public information on cancer, risk factors, prevention, treatment, and the importance of screening. The HCI website presents current, accurate cancer information online at www.huntsmancancer.org. The public may also call a toll-free cancer information line at 888.HCI.2100.


Identify Eligible Clients/Referral

Clients and families may be self-referred, referred by physicians, or referred from other research projects or clinical trials.

Client Education

Services at Huntsman Cancer Institute include the following:

  • genetic counseling
  • Coordination of genetic testing
  • Personalized cancer screening and management plans
  • Comprehensive cancer screening and prevention services
  • Referral to appropriate research studies

The HCI website presents current, accurate cancer information online at www.huntsmancancer.org. The public may also call a toll-free cancer information line at 888.424.2100.

Pretest Counseling

All individuals receive counseling before genetic testing. The counselor assesses the person's expectations and perceptions regarding the risk of developing cancer, especially with respect to learning genetic status. The counselor then reviews the individual's family history and discusses prevention, early detection strategies, and general approaches to risk assessment.

The consultation before genetic testing also includes a psychological assessment to gauge the client's:

readiness to know this information

attitudes about learning the results and the impact they may have on the individual and extended family

available support systems, family dynamics, and family communication patterns

personal coping abilities

This session also covers the known risks, benefits, and limitations of genetic testing.

Informed Consent Procedures

The informed consent process focuses on the issue of DNA testing; clients sign a consent form before blood is drawn for testing.

Testing

Confidentiality Standards

The clinic complies with HIPAA guidelines. Genetic test results are stored in the patient’s electronic medical record and only released with their written permission.

Testing

HCI offers testing for all clinically available cancer predisposition genes, and works closely with ARUP laboratories to ensure optimal approaches for genetic testing are available locally. For conditions that ARUP does not offer testing for, tests can be sent to outside laboratories through the ARUP referral testing department. The clinic bills institutionally for most tests and HCI financial counselors assist patients with preauthorization and payment options.

Laboratory Quality Assurance

The commercial laboratories used for genetic testing are CLIA-certified and CAP-approved. Their quality control policies and procedures provide surveillance and quality assurance of the laboratory tests.

Test Result Interpretation

Cancer risk is estimated based on genetic laboratory findings, published information about the given mutation or condition (including that from database repositories), and the patient's personal and family history and lifestyle factors.


 

Cancer Risk Counseling and Follow-Up

Post-test Counseling

Once results are available, the genetic counselor discusses the following in a post-test counseling session:

  • Increased or decreased risk results and appropriate supportive counseling
  • Ramifications of transmitting the mutation to children and future children, if the client is found to have a predisposition mutation
  • Risks to other relatives and a recommendation that high-risk relatives consider enrolling in the clinic
  • Support for contacting at-risk family members, including an example letter and role-playing scenarios
  • Referral to appropriate specialists
  • Referral to appropriate research studies

Cancer Screening

Counselors and physicians provide information about screening options specific to the patient during a post-test counseling session. Patients may choose to have their follow-up care at HCI, including comprehensive cancer screening and prevention services. Patients can also be provided with a written management plan that they can take back to their local physician. Patients are welcome to return to clinic or contact clinic staff by phone at any point to review or update information.

Medical and Surgical Management

During a post-test counseling session, counselors provide both carriers and non-carriers with information about medical management choices, including the option of surgical intervention or chemoprevention, as appropriate.

Psychological and Supportive Services

Several psychological and supportive resources are available. Referralcan be made to community and national support groups, social workers, psychologists, and psychiatrists.

Research

Huntsman Cancer Institute conducts many research studies that involve members of genetically higher risk families and encourages clients to participate when they are eligible, willing, and able. The research includes basic science to understand the molecular nature of the genes, translational research, behaviorial studies and chemoprevention trials. Each study has policies that determine eligibility and invite clients into trials.

Participating in Familial Registries or National Registries

Huntsman Cancer Institute participates in national research consortiums including the Breast Cancer Family Registries (NCI sponsored), the Lynch Syndrome Screening Network (CDC sponsored), Li-Fraumeni Clinical Research Working Group (NCI sponsored), and GenoMEL (EU sponsored)

Other Components of Genetic Services

Quality Assurance

Genetic counselors review cases weekly with the medical directors, other counselors, and lab directors as necessary.