Cancer Genetics FAQ
Frequently Asked Questions
What is genetic testing?
Genetic testing is a way to look for mutations or changes in your DNA (the genetic material you inherit from your parents). It is most often done with a typical blood draw. One or two tubes of blood are drawn and sent to an outside laboratory for analysis. In some cases genetic testing can be done using a saliva sample. You do not need to fast or do any kind of preparation before a blood draw for genetic testing.
How expensive is genetic testing? Will it be covered by my insurance?
Most insurance companies cover the cost of testing when medically indicated. The cost of genetic testing varies, but is currently about $250. The laboratories that perform genetic testing will contact your insurance company to determine if you have an out-of-pocket cost for genetic testing upon receiving a blood sample. If your out-of-pocket expense exceeds a minimum amount (generally between $0 - $100), they will call you before processing your test. At this time, you would have the option to decline testing, if you were not comfortable with the out of pocket expense. If you prefer to know about any out-of-pocket costs for genetic testing before testing, the genetic counselor can discuss additional options at your appointment.
How long does it take to get test genetic results back?
Genetic test results typically take 2-4 weeks to come back. Some disease specific tests can be ordered for patients making immediate medical decisions, so we get results back sooner, typically 5-12 calendar days.
Will I be discriminated against because I had genetic testing?
Genetic discrimination is a concern for some patients when considering genetic testing. Federal and state laws prevent genetic discrimination based on genetic test results. The Genetic Information Non-Discrimination Act (GINA) provides protection from genetic discrimination on a national level. GINA prohibits discrimination by health insurance companies and employers based on “genetic information.” In this case, “genetic information” is defined as: your genetic test results; your relatives’ genetic test results (up to and including fourth degree relatives); and/or information about family history of any disease or disorder.
These laws, however, do not protect individuals from genetic discrimination in life, long-term disability, or long-term care insurance policies. Some individuals consider making changes to their insurance policies before pursuing genetic counseling and testing. This is more often a concern for individuals who have never been diagnosed with cancer. To our knowledge, insurance discrimination based on genetic testing is rare. However, we encourage you to consider these risks prior to proceeding with genetic counseling and testing. Find more information about GINA.
Am I the best person in my family to have genetic testing?
Genetic test results provide the most information to a family when the first person to have genetic testing is an individual who has been affected with cancer. If a family meets criteria to consider genetic testing, but the family members who have had cancer are unable or unwilling to be tested, we then consider testing unaffected individuals.
Will I meet with a doctor during my appointment?
Your first appointment will typically be with a genetic counselor. A genetic counselor is a health professional with graduate training in medical genetics and counseling skills. Genetic counselors are able to identify and interpret risks of inherited disease, recommend appropriate genetic testing and discuss how genetic testing affects individuals and families. You may be scheduled for a follow-up visit with a physician to discuss medical management recommendations based on your family history and/or genetic test results.
Some patients may have genetic testing ordered through their oncologist. If this is the case for you, please find supplemental information about genetic testing.
What if I have already had genetic testing? Do I need to have it again?
Our knowledge about hereditary cancer changes over time, as do the genetic testing technologies. If you have already had genetic testing we encourage you to talk to your doctor to see if updated genetic testing may be appropriate. For example, an update to the BRCA1/2 test for hereditary breast cancer was added in 2006. If you had BRCA testing prior to 2006, you may be eligible for updated testing. Even those who had testing after 2006 may be eligible for updated BRCA1/2 testing as not all insurance companies covered this testing when it first became available. Additionally, we now offer testing for more genes than we were able to even a few years ago. You may be eligible for updated cancer gene panel testing. If you have any questions about whether you might qualify for updated testing please call us at 617-667-1905.
What if I just want genetic testing and not genetic counseling?
We believe that it is important to meet with a genetic counselor prior to undergoing genetic testing. A genetic counselor can make sure you are being offered appropriate testing options based on your personal and/or family history of cancer and allow you the opportunity to ask questions about the genetic testing process.
What if I just want genetic counseling and not genetic testing?
Genetic testing is always optional. You are welcome to come for a consultation with a genetic counselor to gather more information, even if you choose not to pursue genetic testing.