Your chance of having the gene mutation depends on many things, including how you are related to the family member who is BRCA-positive, and your personal and family history. The best way to determine your chance is to see a genetic counselor. He or she can provide information on hereditary cancer and evaluate your family history and medical records, at which point you can decide whether or not to pursue genetic testing.
Genetic counseling is provided by a board-certified and state-licensed counselor who has extensive training and experience in hereditary cancer. The genetic counseling visit is a chance to learn about the mutation in your family and how it might affect you. The genetic counselor will help you decide whether testing is right for you at this time, based on a variety of medical and personal factors.
Genetic testing can lead to a wide range of sometimes-complex results. When you are testing for a mutation that has already been found in a family member, the results are easier to interpret.
If you test positive for the same mutation as your family member, you have an increased chance of developing certain types of cancer. This information allows you to pursue early detection and/or prevention for cancer. Each child of a family member who has a positive genetic test has a 50% chance of also having the mutation.
If you test negative for the mutation in your family member, your chances of developing cancer are similar to the average person. Your genetic counselor will look at your complete personal and family history to make recommendations, but in many cases, people who test negative for a family mutation can follow the general population guidelines for cancer detection. A family member who has not inherited the mutation cannot pass it on to her or his children.
Some people are hesitant to pursue genetic counseling or testing, because they feel “there is nothing that can be done with the information” or fear that they will be pressured into major procedures, like risk-reducing surgery. In fact, there are a variety of options available to people who have an increased chance of cancer based on their family history or genetic testing results. These include increased surveillance, diet and lifestyle changes, medications that reduce cancer risk, and risk-reducing surgery. There are also new methods of cancer detection and prevention that are being developed. All these options can be discussed in detail at your visit, and the genetic counselor will support you in choosing a plan that is right for you.
If, after genetic counseling, you decide that this is not the right time for you to have genetic testing, the counselor can still help with discussing cancer surveillance and prevention. If you are closely related to the family member who has a mutation, we will usually recommend following the guidelines for increased cancer screening, as if positive. However, we recommend genetic testing before considering medications or surgery to prevent cancer.
Many insurance companies will cover this test and associated genetic counseling when there is a known family mutation. With no insurance, the genetic test for a known family mutation costs approximately $200. The cost of accompanying genetic counseling is also usually covered by insurance.
There are multiple state and federal laws that provide legal protection from genetic discrimination. These include GINA (Genetic Information Nondiscrimination Act), HIPAA (Health Insurance Portability and Accountability Act), and the ACA (Affordable Care Act). These laws prohibit health insurers from using genetic testing results to discriminate against individuals. This means that a health insurer in the United States cannot raise your rates or deny you coverage based on the results of genetic testing. These laws apply to health insurance but not to long-term care insurance, disability insurance, or life insurance.
Genetic testing is helpful for people who have already had cancer. In some cases, the genetic test results can help your doctors choose treatments that are specific for your type of cancer. People who have had cancer can also learn about steps they can take to detect or reduce the chance of future cancers. For example, a hereditary predisposition to breast cancer can be associated with an increased chance of ovarian cancer.
Genetic counseling will also provide information about whether family members have an increased chance of developing cancer, so they can take steps to detect cancer early or prevent it from occurring.