Ellen T. Matloff, MS, CGC
Genetic counseling—including testing and risk assessment—is one of the most rapidly growing areas of oncology and has become the standard of care for patients with a personal and family history of breast, ovary, or colon cancer.
Germline genetic testing is also appropriate for some patients with pancreatic, renal, skin, or thyroid cancers, as well as for those with rare cancer syndromes such as retinoblastoma, von Hippel-Lindau disease and multiple endocrine neoplasias (MEN). The criteria for testing have widened over the years to include not only patients with extensive, multigenerational family histories of early-onset cancer, but much broader patient populations. For example, any woman with invasive epithelial ovarian cancer is now a candidate, as is any patient under the age of 60 years with a triple negative breast cancer. These criteria will continue to broaden as the results of genetic testing are used more widely in surgical-, radiation-, and chemotherapy-decision making. As genetic testing grows, it represents a potential opportunity to provide additional services to an oncology practice’s patients.
Unfortunately, most clinical cancer genetic counselors are located at academic medical centers and it is not uncommon for wait lists at those institutions to range from 4–10 months for non-emergency cases. This supply and demand dilemma presents a unique and forward-thinking opportunity for an oncology practice.
Recruitment and Compensation
Oncology practices can recruit and employ cancer genetic counselors to work as part of their integrated care team. The average cancer genetic counselor earns between $75–$100K plus benefits, and requires consultation space (vs clinic space) for counseling sessions. Oncology practices with multiple sites could employ a fullor part-time genetic counselor to travel to all sites, or could hire a genetic counselor from an academic institution to provide satellite clinics on a monthly or weekly basis.
Reimbursement for genetic counseling is low, compared with services performed by oncology physicians and nurses. The opportunity for the oncology practice is instead one of niche marketing, increasing catchment areas, and developing an area of unique specialization that will net a new group of patients. For example, it is not uncommon for a patient to travel 1 to 2 hours to see a genetic counselor certified by the American Board of Genetic Counseling. Those patients will then often require high-risk surveillance, chemoprevention and/or prophylactic surgeries. Their family members will also require genetic counseling, testing and long-term services. Unfortunately, it is quite likely that they will someday be diagnosed with cancer, and having an established relationship with an oncology team is certainly of great benefit to those patients and the care team.
Standard of Care
Genetic testing is also beginning to be used more frequently in tumor testing. Many hospitals already perform microsatellite instability testing (MSI) or immuno-histochemistry (IHC) on every colorectal tumor and uterine tumors diagnosed in patients less than 60 years of age. Cancer genetic counselors will also prove helpful in interpreting somatic tumor genetic testing and the implications for the patient and family as that field moves forward at breakneck speed. The results of screening tests help to determine which patients may be good candidates for germline genetic testing. Those patients then require a referral for genetic counseling and testing. Widespread testing of tumor blocks is being offered in hopes of personalizing treatment of individual cancers. The panels involved in such testing often include more than 100 genes and the reports can be 10 pages or longer in length. The results of such testing can be critical in determining the correct treatment plan for an individual patient, and can sometimes have implications for that patient’s risk of carrying a germline mutation as well. As the utility of testing grows and the cost drops, genetic testing may become the standard of care for every oncology patient within the next decade.
The promise of genetic testing’s impact on oncology care is great, not only for the individual patient, but for his or her entire family. The complexity of testing is significant, and has increased at least 20 times since the June 2013 Supreme Court decision to ban gene patents, which opened up options for panel testing for patients at risk for hereditary breast and ovarian cancer syndromes.