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Frequently Asked Questions + Resources

You likely have many questions about genetic counseling and genetic testing. Here are some of the more common questions.

Q. How is genetic testing done?

A. Genetic testing is a simple process. Usually it can be done by collecting a little bit of blood or taking saliva by swabbing the inside of your cheek. The sample is sent to a laboratory, which runs the tests. Learn more about the testing process.

DNA Banking allows genetic material from an individual to be saved for future use.It lets families pursue genetic testing at a later time and take advantage of future technology. Learn more about DNA Banking.

Q. Can my insurance company discriminate against me based on the results of my genetic test results?

A. The Genetic Information Nondiscrimination Act of 2008 (GINA) protects you and your genetic information from being used (in a company with 15 or more employees) in employment decisions and when determining your eligibility for medical insurance. This helps ensure that you can pursue genetic testing and medical care as well as participate in clinical research, without fear of having that information used against you or your family members. Be aware that GINA does not protect you against discrimination in the purchase of life, disability or long-term care insurance. Learn more about GINA and protection against genetic discrimination.

Q. How much does genetic counseling and genetic testing cost, and will insurance cover it?

A. Health insurance often pays for genetic counseling. In many cases, it pays for genetic testing when it is recommended by a genetic counselor or doctor. However, before having any genetic tests, it is important to check with your insurance company to verify coverage. Different companies have different policies. Some cover certain tests but not others. As with most healthcare services, you may need to pay for some of the cost.

Q. Should I just use a direct-to-consumer, at-home test?

There are several different ways to get genetic testing. Genetic tests you can order at home without a healthcare provider aren’t regulated like genetic tests that are ordered by a genetic counselor or doctor, they may not provide the information you are looking for, and often there is no guidance about how to interpret the results. Learn more about the difference between physician- or genetic counselor-ordered genetic testing and direct-to-consumer, at-home testing. 

Q. Is genetic testing the same as DNA testing?

A. Not always.  There are many types of DNA testing, and medical DNA testing that is used to identify variants that indicate a risk for disease is one type. 

Other types of genetic testing include forensic DNA testing and ancestry DNA testing.  In forensic DNA testing, your DNA is used to identify unique characteristics about you for legal purposes. For example, DNA testing can identify crime victims or rule out a crime suspect. It also can be used to determine the father of a child. Ancestry DNA testing is used to provide information about your ethnicity, distant relatives or to perform genealogical research.

Q.  Where can I learn more about specific genetic tests?

A.  A good resource for information about specific genetic tests is Lab Tests Online.LTO Logo Lab Tests Online is an award-winning health information web resource designed to help patients and caregivers understand the many lab tests that are a vital part of medical care. Laboratory professionals, who are experts in the field, develop and review all content, including articles on lab tests, conditions/diseases, screening, clinical laboratory topics, and lab test news. The site is produced by AACC, a global scientific and medical professional organization dedicated to clinical laboratory science and its application to healthcare. 

Q. Do I have to have genetic testing?

A. Genetic testing is always optional. If you are considering genetic testing or are unsure if you would like to be tested, a genetic counselor can help guide you, explaining what genetic tests you might consider and what information those results will – and won’t – provide. After seeing a genetic counselor, you can choose whether or not you would like to proceed with testing. Learn more about genetic counselors and some common referral indications.

Q. How can my condition be genetic if no one else in my family has it?

A. Genetics is a complex topic. There are different ways you can inherit a genetic variant that can cause a disease or condition. Because of the way genetics works, it is possible for you to have a new genetic mutation that neither of your biological parents have, although this is rare. It is also possible to inherit a condition that no one else in your family seems to have. Others in your family may have the same mutation and eventually develop the condition, or some may never develop the condition due to environmental and other factors. In other cases, people in your family may be carriers of a condition – meaning they can pass it to their children without ever showing signs of it. Learn more about how this works, and download the Family Health History Fact Sheet.

Q. How will genetic testing help me if I already have cancer?

A. Genetic testing can help identify whether you inherited a gene mutation that caused your cancer and if so, this information could help doctors treat you more effectively. Researchers have found some inherited types of cancer don’t respond to standard treatments. In some cases those cancers respond very well to other treatments. Knowing if your cancer was inherited can also help determine who else in your family is at risk and steps they can take to avoid getting cancer as well. Learn more.

Q. Can I have genetic testing without seeing a counselor?

A.  You can have genetic testing without seeing a genetic counselor. Your doctor can order tests and provide you the results. However, because your doctor may not be an expert in genetics, you may receive results that you don’t understand and you may have additional questions that leave you confused and worried. Genetic counselors have advanced training in medical genetics and counseling to interpret tests, and guide and support you as you seek more information about how inherited diseases and conditions might affect you or your family. Genetic counselors are able to keep up with the rapidly growing discoveries in genetics and can keep in contact with you if new recommendations come out or something new is discovered about your genetic mutation. Learn more.

Q. Can genetic counseling help me if I don’t know anything about my family history?

A  While family history is helpful, there are a number of ways genetic counseling can help you even if you don’t know anything about it. If you’ve been diagnosed with cancer under the age of 50, or if it is a rare type of cancer, genetic counseling can help you decide whether genetic testing might be beneficial. Learn more.

Q. How can genetic counseling help me if I am pregnant?

A. Genetic counseling may be helpful if you are pregnant. For example, many pregnant women seek to have testing for conditions such as Down syndrome or spina bifida, even if they have no family history of those conditions. If you are pregnant, had a concerning ultrasound or other test result, or are worried about how medications you are taking could affect your pregnancy, genetic counseling may help. Learn more.

Q: How can I get more information on genetic conditions?

A. The National Society of Genetic Counselors hosts six webinars each year. The Genetic Counselors and You Webinar Series aims to provide information about specific genetic conditions, as well as provide up-to-date information on changing genetic technologies.