Hereditary Cancer Risk Assessment, Testing, and Genetic Counseling
It can be challenging to determine if a patient or family has or is at risk for an inherited cancer syndrome. Factors include the number and variety of predisposition genes, the contributions of environment and health behaviors to developing or preventing cancer, the background risk of cancer, and lack of complete and verified information about a family’s health history. The decision to test, communication of results, and helping the patient share outcomes with potentially at-risk family members, if he or she chooses, also require significantly more attention than routine lab tests.
Therefore NeoGenomics requires that patients having a hereditary cancer test in our laboratory and their providers complete the Consent for Hereditary Cancer Genetic Testing. This form confirms the patient and provider have fulfilled steps necessary for informed consent through the process of genetic counseling. Below are selected resources for professionals and patients to plan the assessment and testing process.
What is Genetic Counseling?
Genetic counseling for hereditary cancer risk is a communication, evaluation, and decision process that occurs between a genetic counselor, a medical care provider, and a person who has or whose family has cancer. Usually the cancer cases are atypical because of young age of onset, multiple primaries, multiple relatives affected, or other signs. The process begins well before a test is ordered and involves gathering a patient’s personal and family medical histories, assessing the risk for an inherited predisposition to cancer, discussing testing options and potential outcomes, and explaining results and implications for the patient and relatives. A primary goal is enabling the patient to make the best decisions for himself or herself through education and truly informed consent. The decision to pursue testing or not lies with the patient.
Genetic counseling may be performed by certified genetic counselors (who have licenses in states that require them) or by physicians, nurses, or other medical specialists. All professional organizations with an interest in cancer genetic testing recommend counseling.
Finding a Genetic Counselor
- Contact the patient’s insurance company
- Some insurers have established counseling services or preferred providers.
- Telephone counseling: InformedDNA
- Website http://informeddna.com and phone (800) 975-4819
- This web-based business employs numerous certified genetic counselors who can counsel patients by telephone in all 50 states. Patients who call will be told their health care provider needs to complete a one-page referral form to initiate the process. InformedDNA will bill the patient’s insurance directly if it is contracted in their network.
- Telephone or in-person counseling: NCI Cancer Genetics Services Directory
- Website www.cancer.gov/about-cancer/causes-prevention/genetics/directory
- The National Cancer Institute’s Cancer Genetics Services Directory is a directory of professionals from various disciplines, such as genetic counseling, oncology, nursing, psychology, social work, and clinical genetics. Providers listed in the Directory must meet requirements for certification, training, and professional affiliations.
- Telephone or in-person counseling: National Society of Genetic Counselors
- Website www.nsgc.org
- Genetic counselors have a master’s degree (at least) and complete a board exam and continuing education in genetic counseling. Use the “Find a Counselor” to search by state or zip code for the specialty “Cancer”.
Identifying Patients for Genetic Counseling and Testing
- ACMG Practice Guideline, 2015
- A practice guideline from the American College of Medical Genetics and Genomics and the National Society of Genetic Counselors: referral indications for cancer predisposition assessment. Genet Med. 2015;17(1):70-87.
- NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for detection, prevention, & risk reduction
- Website www.nccn.org – free registration required
- NCCN Guidelines® for Breast and Ovarian Genetic/Familial High-Risk Assessment
- NCCN Guidelines for Colorectal Genetic/Familial High-Risk Assessment
Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) © National Comprehensive Cancer Network, Inc 2016. All rights reserved. Accessed July 11, 2016. To view the most recent and complete version of the guideline, go online to NCCN.org. NATIONAL COMPREHENSIVE CANCER NETWORK®, NCCN®, NCCN GUIDELINES®, and all other NCCN Content are trademarks owned by the National Comprehensive Cancer Network, Inc.