Genetic Testing FAQ
Genetic Testing FAQ
How do I know if I qualify for testing?
- You or a family member was diagnosed with cancer at a young age (less than 50)
- You or a family member was diagnosed with more than one cancer
- Multiple family members on the same side of the family diagnosed with cancer
- You or a family member was diagnosed with pancreatic cancer, ovarian cancer, male breast cancer, or metastatic prostate cancer.
* There are other qualifying factors for cancer genetic testing, so it is important to call our office to make an appointment.
Below we answer some of the most common questions regarding cancer genetic testing. Browse through the questions or click on one here to go to a specific question.
- What is a genetic test?
- What does it mean if I test positive for a genetic mutation?
- What are some of the genetic mutations and what are they associated with?
- If I get genetic testing and am found to have a mutation, can I be denied health insurance?
- What if I am worried about the emotional burden of genetic testing results?
- What are the most common possible results?
What is a genetic test?
The test is done with a blood or saliva sample. These tests can predict who may be at risk of developing cancer, and why. The one main advantage of testing is that it allows you and your family to know ahead of time what your cancer risk may be and what actions you can take to lower that risk. The results of genetic testing may guide when to start cancer screening tests, like mammograms and colonoscopies, and how often they are done.
What does it mean if I test positive for a genetic mutation?
When you have a genetic test, there are three possible outcomes. One is a positive result. This means there is a pathogenic variant which likely caused your personal history and/or family history of cancer. A positive result can change the recommendations for treatment for a current cancer diagnosis, and it can also change the recommended screenings and preventative options for future cancer risks. If you test positive for a pathogenic variant, there is a 50% chance your children, siblings, and parents have the same pathogenic variant.
What are some of the genetic mutations and what are they associated with?
There is still much to be learned when it comes to genetic mutations we know are linked to specific kinds of cancer. This information is changing rapidly, but you can view a helpful chart here.
If I get genetic testing and am found to have a mutation, can I be denied health insurance?
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects people from genetic discrimination in health insurance and employment. This means it is against the law for health insurers to request, require or use genetic information to make decisions about your eligibility for health insurance or your health insurance premium, contribution amounts or terms of coverage.
Sometimes health insurers need genetic information to make decisions about paying for certain tests or treatments. It is legal for them to ask for this information. However, once they have it, they cannot use it to discriminate against you in the ways described above.
Please note that GINA does not apply to life, disability or long-term care insurance. If you would like life insurance, it would be wise to obtain it before having genetic testing.
What if I am worried about the emotional burden of genetic testing results?
Not everyone will choose to have genetic testing. One reason is that it may cause emotional upset to find out you’re at an increased risk for cancer or that you may have passed increased risk on to others in the family. For some people, it may not be the right time in their life to learn this information, or they may not be ready to learn about cancer genetic risk.
What are the most common possible results?
The second possible result is negative. If an individual who’s been diagnosed with cancer tests negative, it means that current genetic testing technology could not find a genetic change which caused it, or would put you at an increased risk later on. If a person who has never had cancer tests negative, recommendations for cancer surveillance are based on personal and family history. Even if there is no genetic explanation for the pattern of cancers in your family, you and your family may need extra cancer screenings.
The third type of result is a “variant of uncertain significance.” This means there is a change in a gene, but it is not known if that change is associated with any increased risk for cancer. Most variants of uncertain significance are eventually found to be harmless, so future management is the same as it is for a negative result; it’s based on your personal and family history.
Make an Appointment
To learn more about our Hereditary Cancer Screening and Risk Reduction program, please call 585-486-0600.
After making your appointment, click this link or scan the below code to fill out your Family History form.
Genetic Testing Insurance Information
I received a letter from my insurance denying coverage for testing, what should I do?
- If you get a letter from your insurance company denying coverage for genetic testing, please ignore it. This letter is an Explanation of Benefits and is Not a bill. You do not need to take any action. You will only receive a bill from the genetic testing company that your testing was run through.
I received a text message or phone call from the testing company, what do I do?
- If you receive a text or phone call from the testing company, please respond ASAP. They may be reaching out to confirm any potential bills. If you do not respond, you might receive an outstanding bill.
- Your ordering provider is not able to respond to the testing company on your behalf.
How much will my bill be for the genetic testing itself?
- We cannot predict a bill for genetic testing. You must meet with a provider in our office for a genetic consultation to decide if you meet criteria for testing.
- If you have a high deductible plan or do not meet genetic testing criteria and are paying for testing out of pocket, your provider will order testing with a company that will offer you a “cash pay” price that will not exceed $250.
- If you have any questions about genetic testing, please reach out directly to the testing company the provider has ordered your testing through.
My insurance is asking for prior authorization codes for my genetic testing and/or genetic consultation visit.
- Our office does NOT have prior authorization codes for your genetic testing. These codes are only obtained after your consultation visit with a provider. Please do not reach out to our office requesting prior authorization codes for genetic testing.
- Your office visit or telemedicine visit with a provider is separate from genetic testing. These visits are charged by YOUR insurance company as “specialty office visits” for genetic testing and counseling. You are financially responsible for copays or deductibles related to your visit. Please contact your insurance company with questions pertaining to this.
Genetic Testing Company Information:
Ambry Genetics Corporation
Alisa Viejo, CA
Billing Phone: (949) 900-5795
Cash price for genetic testing is $249 with two-year, zero percent repayment plans available.
Invitae Corporation
San Francisco, CA
Billing Phone: (800) 436-3037
Cash price for genetic testing is $250. Financial assistance is available for qualifying individuals.
Myriad Genetics
Salt Lake City, UT
Billing Phone: (844) 697-4239
Email: billinghelp@myriad.com
Financial assistance is available for qualifying individuals.
GeneDx
Gaithersburg, MD
Billing Phone: (844) 241-1233
billing@genedx.com