National Comprehensive Cancer Network

2000 Circle of Hope

Salt Lake City, Utah 84112

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 (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.

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

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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

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)

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