Lynch syndrome is caused by a genetic abnormality that can now be easily detected via a genetic panel. These tests can be ordered through a physician or now direct to consumer. 10 years ago genetic testing cost up to $6,000. Fortunately, it is now available for under $300. The test can be done by either a mouth swab or a blood sample.
Lynch syndrome is associated with abnormalities in one of five genes. These are MLH1, MSH2, MSH6, PMS2, and EPCAM. The cancer risks are slightly different depending on which gene is affected.
Because of the multiple risk factors associated with Lynch syndrome, it is important to have either a qualified physician or a genetic counselor help with testing and proper follow-up. If the test is negative you are at average risk for cancers, but if the test is positive your risk for certain cancers is increased. It is important to take the necessary steps to lower those risks. It is also important to notify family members if the test is positive since they are also at risk of having Lynch syndrome. If you do test positive, some lab testing companies offer free testing for family members.
jscreen is one of our partner organizations that offers home testing with a comprehensive genetic panel for under $300. Besides Lynch syndrome, it includes a total of 63 genes (including BRCA1 and BRCA2) for changes that increase the risk of multiple cancers, including breast, ovarian, colon, and pancreatic cancer. This price includes genetic counselling. If you are testing through your physician's office or a genetic counselor, Invitae and Myriad Genetics are two excellent labs that routinely bill insurance companies. If you have a significant family history of Lynch syndrome, your insurance company should cover the testing. Unfortunately the cost to each patient depends on copays and deductibles. If cost is an issue, Invitae and Myriad offer a "self-pay price" that will reduce the patient cost to just $250, if this is requested at the time of ordering. One other option for people without any insurance and having difficulty paying for genetic testing and counseling is another partner organization, Mayberry Memorial. They offer free testing under Project Conquer.
Lastly, it is important to consider getting life, disability, or long-term care insurances prior to getting tested, since some insurance companies discriminate against people with genetic conditions when they write these policies. See our section on “Insurance Issues” for more information. A genetic counselor can help guide you through this process.