Resources for expanding services for hereditary cancer risk assessment

With the increasing role of genetics in diagnosis and treatment of cancer, oncology practices may benefit from expanding services for hereditary cancer risk assessment. Cancer genetic counselors can be an important resource to help oncology practices incorporate or expand services for hereditary cancer risk assessment.

A 2010 professional status survey of members of the National Society of Genetic Counselors (NSGC) found that 73% of genetic counselors responding to the survey offer clinical genetic testing to more than 70% of patients per week. Genetic counseling helps people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following:

• Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.
• Education about inheritance, genetic testing, management, prevention, resources and research.
• Counseling to promote informed choices and adaptation to the risk or condition.

Standard of care

Hereditary cancer risk assessment performed in the context of appropriate genetic counseling is rapidly becoming standard of care for those with significant personal or family history of cancer. Recommendations for pre-test and post-test genetic counseling for hereditary cancer risk assessment have been published and updated by multiple medical organizations and societies, including ASCO, the American College of Obstetricians and Gynecology, the National Comprehensive Cancer Network, and the Society of Gynecologic Oncologists.

Sheri A. Babb

These statements provide guidance for referral for hereditary cancer risk assessment based on personal and family history of cancer and outline requirements for informed consent, pre-test education and counseling, as well as post-test education and counseling. These requirements include evaluation of a three-generation family history, as well as time to address the complex medical and psychosocial issues and support the emotional needs of patients and families seeking information about hereditary cancer risk. Hereditary cancer risk assessment is more than a simple blood test; it requires a significant investment of time.

In February, the American College of Surgeons’ Commission on Cancer posted a working draft of Cancer Program Standards 2012: Ensuring Patient-Centered Care. Within this draft, the commission outlines requirements for provision of hereditary cancer risk assessment services to patients either onsite or by referral to a qualified genetics professional.

The American Board of Genetic Counseling is currently the credentialing organization for the genetic counseling profession in the United States and Canada. As of June 1, 10 states issue licensure for genetic counselors; three have passed bills and multiple states have either introduced or are preparing to introduce genetic counselor licensure bills.

There are nearly 3,000 members in the NSGC. Master’s-trained genetic counselors specializing in cancer genetics work in all regions of the country and are available to assist physician practices in expanding access to hereditary cancer risk assessment. Genetic counselors work in a variety of settings, including university medical centers, private and public hospitals, physicians’ private practices, HMOs, industry, clinical laboratories offering genetic testing, research settings and non-profit organizations.

Variety of duties

In the clinic, the genetic counselor manages intake, constructs a detailed three-generation family history, verifies medical records of key cancer diagnoses in the family, and provides risk assessment, education and pre-test and post-test genetic counseling. The genetic counselor coordinates the genetic testing, including suggesting the most appropriate genetic testing services and laboratory (ie, which labs offer the test in question, which lab offers the most comprehensive testing such as deletion/duplication studies, billing and costs for genetic testing). Genetic counselors serve as an important point of contact for patients with questions related to genetics and up-to-date screening and prevention recommendations. Genetic counselors also provide support to facilitate communication and coordination of care for the patient and family members with hereditary cancer risk.

Ofri Leitner

Other roles of the genetic counselor include assisting in increasing insurance reimbursement by providing proper documentation for coding and billing, and writing letters of medical necessity to increase approval by insurance companies of appropriate genetic testing. At some centers, genetic counselors coordinate genetic screening studies for tumors. Genetic counselors also provide assistance in family-based genetic research or clinical genetic testing for family members who are geographically scattered. Additionally, differential diagnoses based on the pattern of cancers identified by detailed review of the family history may result in additional genetic testing than initially indicated.

Part of the team

Oncologists can expand services for hereditary cancer risk assessment either by identifying a referral source for genetic consultations or by hiring a board-certified genetic counselor as part of their multidisciplinary team. Referral-based genetic counselors provide comprehensive genetic services and serve as an offsite genetic coordinator for patients and their family members.

“Truly multidisciplinary care of breast cancer by definition needs to include genetic counseling, which can markedly affect and improve surgical decision-making and patient comfort with and understanding of their options,” according to Lisa A. Carey, MD, medical director for the UNC Breast Center at the University of North Carolina and associate director of the UNC Lineberger Comprehensive Cancer Center in Chapel Hill.

Some oncology practices employ a genetic counselor as part of their multidisciplinary oncology team. As part of the team, the genetic specialist can participate in weekly tumor board conferences, assist in identification of

newly diagnosed cancer patients with potential hereditary cancer risk, manage genetic testing services and coordinate follow-up.

“Genetic counselors play a vital role on our service. Without their expertise, we could not adequately evaluate our patients or meet their needs,” said David G. Mutch, MD, FACOG, division director of gynecologic oncology at Washington University School of Medicine – Siteman Cancer Center in St. Louis. “Our genetic counselor provides upfront risk evaluation, explains the testing and the consequences of testing. She also remains available for the patients and their families, as other issues arise within the family, and provides continued counseling as new information comes to light.”

Web resource

The NSGC website (www.nsgc.org) provides a portal for information for physicians seeking expansion of genetic services. A convenient resource database, “Find a Genetic Counselor,” allows physicians and patients to easily locate a genetic counselor in a particular geographic location with a specific area of expertise. There is also an FAQ section for physicians seeking additional information about utilizing genetic counseling services. Physicians who are interested in hiring a genetic counselor can post an open position through the NSGC website on the NSGC Job Connection, which is visible exclusively to NSGC members.

In summary, genetic counselors are a vital resource to help oncology practices incorporate increased services for hereditary cancer risk assessment through referral to genetic services or by including a genetic counselor as a member of the multidisciplinary team caring for oncology patients.

Sheri A. Babb, MS, is a certified genetic counselor, division of gynecologic oncology, Washington University School of Medicine, St. Louis, M.O.

Ofri Leitner, MS, is a certified genetic counselor and clinical assistant professor of genetics, UNC Cancer & Adult Genetics, Chapel Hill, N.C.

Disclosure: The authors report no relevant financial disclosures.

For more information:

• American College of Obstetrics and Gynecology. Obstet Gynecol. 2009;113:957-966.
• American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-Centered Care. Available at: www.facs.org/cancer/coc/cps2011.html.
• Burt RW. J Natl Compr Canc Netw. 2010;8:8-61.
• Lancaster JM. Gynecol Oncol. 2007;107:159-162.
• Resta R. J Genet Couns. 2006;15:77-83.
• Robson ME. J Clin Oncol. 2010;28:893-901.