Frequently Asked Questions About Genetic Counseling

Learn more about genetic counseling at Moffitt in these frequently asked questions: 

Who is a Genetic Counselor?

A genetic counselor is a specialized healthcare provider with a master’s degree education in both clinical genetics and psychosocial counseling. Genetic counselors analyze personal and family history information to provide a risk assessment, identify the most appropriate genetic test, and support families in making informed decisions for their future health.

Do I Have to Travel to Tampa for Genetic Counseling?

No. We currently offer genetic counseling and testing services both in-person at the McKinley campus and with telehealth via Zoom for patients currently in the state of Florida. The telehealth appointments involve a saliva kit mailed to your home address. You can let the scheduler know if you prefer an in-person or virtual visit.

Will I Be Required to Have Genetic Testing?

Absolutely not. The decision to pursue genetic testing is personal and individualized. The purpose of genetic counseling is to provide a patient with the most accurate information about genetic testing to help them decide if that is information they may like to learn for themselves.

What Specimen is Needed and How Long Do Results Take?

Genetic testing is commonly performed on blood or saliva specimens; both are equally accurate. These sample types take two to three weeks to produce results. If you have a history of blood cancer, you may be required to undergo a skin punch biopsy to obtain a reliable specimen. This testing can take four to six weeks for results.

How Much Does Genetic Testing Cost?

Genetic testing is commonly billed through health insurance when medically indicated. On average, these patients pay nothing to $100, dependent upon deductible and co-pays. If genetic testing is not medically indicated, the self-pay price of genetic testing is currently $250.

What Types of Genes Are Analyzed?

Genes related to hereditary cancer risk; Moffitt does not test for other hereditary risk factors, like cardiovascular disease or dementia. Your genetic counselor will discuss the option of a larger, more comprehensive genetic test to analyze many genes associated with different cancer types, including breast, colon, gynecological, prostate, pancreatic, and other cancers.

 

Are There Confidentiality or Insurance Protections?

The federal Genetic Information Nondiscrimination Act (GINA), passed in 2008, protects against discrimination in the realms of employment and health insurance. This applies to both private insurance as well as Medicare/Medicaid, and means that health insurers are legally prevented from denying coverage or raising costs for individuals with positive genetic test results. There are exceptions to this law for certain groups, including military members insured through Tricare and small business insurance plans with fewer than 15 employees.

As of January 1, 2021, Florida became the first U.S. state to provide additional protections that prevent discrimination for life, long-term care, and disability insurance plans.

What Results Might I Get Back?

There are three possible outcomes of genetic testing.

  1. Positive: A mutation was identified in one or more of the genes analyzed. There is an increased chance of developing cancer, but the exact chances depend on what gene the mutation is in. It is important to know that most mutations do not cause a 100% guarantee of developing cancer.
  2. Negative: No gene mutations were identified and the likelihood of a hereditary predisposition to cancer has been significantly reduced.
  3. Inconclusive: There was a genetic change identified in a gene, but the laboratory does not have enough evidence to determine whether the change increases the risk for cancer or if it is a harmless finding. Given that most inconclusive findings are eventually classified as benign, we usually treat these results like negatives.
What Happens After Genetic Testing?

If you tested positive and a gene mutation was identified, recommendations may include preventative surgery, medications to reduce the risk of cancer, or initiating cancer screenings to start at an earlier age and/or be performed more frequently than usual. Your genetic counselor can place referrals with Moffitt physicians for you to receive the appropriate follow-up care.

Most of these genes are inherited in a dominant pattern. That means if you have tested positive, then your parents, siblings, and children each have a 50% chance to also be affected. Your genetic counselor can help coordinate genetic testing for your relatives, which can often be completed free of charge for at-risk family members within the next few months of your testing.

If you tested negative, it may still be recommended to follow with earlier or more frequent screenings if there is a strong family history of cancer. Your genetic counselor can provide surveillance recommendations based on your family history and test results.

Are There Any Downsides to Genetic Testing?

Many patients can learn about an increased risk for cancer without a negative impact on their mental health. For other patients, learning this information may cause increased stress and anxiety. There may also be an impact on family dynamics, including feelings of guilt or anger about passing on or inheriting a mutation.

How Do I Schedule an Appointment?

To learn more about how genetics can influence your individual cancer risk, call 1-888-663-3488 or complete a new patient registration form online. No referral is required.

You can also contact the Moffitt Genetics service directly at 813-745-3555 or by emailing genetics@moffitt.org.