Neurology Genetics Program

If you have a personal or family history of a neurological condition, genetic counseling could be beneficial for you or your family members. Although most neurological disease is due to non-genetic factors — such as environment, lifestyle, or age — some forms of neurological disease are caused by gene variants that can be passed down from generation to generation. Genetic counseling can help you understand whether the neurological condition in your family might be hereditary and provide you with information to determine if genetic testing might be right for you.

Genetic Testing for Neurological Conditions

Genetic testing is typically performed through a saliva or blood sample, used to determine if you have a genetic variant that may explain your diagnosis or risk for a neurological condition. When genetic testing identifies a variant, or “difference”, in your genes, this could have impacts for both you and your family members. While not all neurological conditions have an underlying genetic cause, more and more are being linked to specific, harmful variants in certain genes.

How Genetic Testing Can Help

Genetic testing results can:

• Establish or confirm your specific diagnosis
• Provide an explanation of the underlying cause of your neurological condition
• Assist you in making informed medical decisions and provide an opportunity to start risk reduction strategies
• Clarify if you are at risk for a neurological condition running in your family
• Identify other at-risk relatives for whom genetic testing is recommended

Personalized Genetic Counseling

Genetic counseling can help you understand hereditary neurological conditions and the benefits and limitations of genetic testing. Our specially trained genetic counselors help you make informed decisions about genetic testing, screening, and management. We offer support and resources to help you handle the emotional impact that genetic testing results may have on you and your family.

Preparing for Your First Genetic Counseling Appointment

If possible, talk with your relatives about your family’s history of neurological disease — specifically the type of neurological disease your relatives had, the age at which family members were diagnosed, and information about deceased relatives, such as the age they passed away and cause of death. If you or a relative has had genetic testing, please bring a copy of the result to your appointment. It’s also helpful to write down questions for the genetic counselor. You’re welcome and encouraged to bring a friend or family member with you to your appointment.

What to Expect at Your Appointment

Your genetic counselor will ask you about your personal medical history and family history of neurologic disease. Your counselor will:

• Educate you about hereditary neurological disease and inheritance
• Explain possible test results and provide follow-up recommendations
• Review your insurance coverage and legal protection related to genetic testing
• Discuss if genetic testing is available and steps to proceed with testing

If genetic testing is available for the neurologic condition in your family and you feel having testing is the right decision for you, your genetic testing can be ordered, and blood specimen collected the same day as your appointment.

How to Get Your Results

Once the results are available, your genetic counselor will call you and explain your results in detail. You’ll learn:

• Whether a genetic variant has been identified in a gene known to cause neurologic disease
• How your results impact your future management recommendations
• How your results impact your family members
• If applicable, recurrence risk and family planning options

You’ll be offered a copy of your results, and you always have the option to schedule a follow-up appointment with your genetic counselor to further discuss your results or answer your questions.

Insurance Coverage of Genetic Testing

Most insurance plans cover genetic testing if there are appropriate risk factors for testing. During your session, your genetic counselor can explain the billing process for testing. Most genetic testing labs will verify your insurance coverage and notify you about any out-of-pocket expense before beginning the test. In most cases, you don’t need to call your insurance provider before your counseling appointment.

Referrals for Genetic Testing

We recommend you always discuss your concerns about your personal or family history of neurological disease with your physicians. Although your doctor can refer you to genetic counseling, you don’t need a referral to schedule an appointment. However, if you are seeking genetic counseling based on a family history of neurological disease, a referral to neurology may be recommended prior to scheduling your genetic counseling.