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Elderly Man Getting Hearing Test

Genetics of Hearing Loss

Hearing loss can have a number of causes. In patients today, genetic causes are likely the most important source of hearing loss. In cases of genetic hearing loss, a change in one or more of a patient’s genes has caused their hearing loss. Some genetic changes cause only hearing loss (nonsyndromic) while others can cause hearing loss in addition to other issues impacting other parts of the body (syndromic).

At the Penn Center for Adult Onset Hearing Loss, our mission is to identify the genetic causes of adult onset hearing loss and develop new treatment options.

Genetic counseling is a step toward identifying a genetic cause for your hearing loss.

To learn more about genetic analysis for your hearing loss, please call 215-662-7360.

What Are Possible Benefits Of Genetic Testing?

The results of genetic testing may help:

  • Guide your medical management and provide information about prognosis.
  • Clarify the diagnosis of a genetic syndrome and adjust your medical care accordingly.
  • Identify a genetic cause for your hearing loss.
  • Identify the genetic mutation causing hearing loss as the first step in developing a cure.
  • Inform your family members of their potential risk to develop hearing loss.

Will My Insurance Cover The Cost Of Testing?

Genetic testing is typically covered by insurance. Your genetic counselor will discuss coverage of the testing based on your personal insurance. You do not need to contact your insurance company prior to the appointment. Genetic testing can also be held by the laboratory until your insurance verifies coverage of the test.

The maximum cost of the testing without insurance coverage or via self-pay is approximately $600. Funding may be available through our philanthropic sources to offset the cost of testing for those patients whose insurance does not cover testing.

If I Have Genetic Counseling, Do I Have To Have Genetic Testing?

No. Meeting with a genetic counselor does not mean you are obligated to have genetic testing. The choice to have genetic testing is personal and the clinic staff are there to support you.

What Can I Expect During My Appointment?

You will meet with a Board-certified genetic counselor who will review your medical and family history, as well as the benefits, risks, and limitations of genetic testing. At the end of your conversation, you will decide if you want to proceed with testing. You will also have the opportunity to enroll in the Penn Medicine BioBank. Your Penn physician will then perform a brief examination.

What Are Possible Risks Of Genetic Testing?

Genetic testing may not reveal the cause of your hearing loss or you may receive an “uncertain” result.

  • You may learn that you are at risk of other health concerns through genetic testing.
  • The Genetic Information Nondiscrimination Act protects you from discrimination by your health insurance or employer based on your genetic information. However, the law does not apply in every circumstance. Your genetic counselor will review this law in detail during your appointment.

Helpful Tips For Your Appointment

  • The genetic counselor will have access to your medical records and will review them before your appointment so there is no need to bring them with you.
  • If you are enrolled in myPennMedicine you will receive a message asking you to provide information about your family history. Please fill out the relevant information in a return message to the sender.
  • The evaluation will take at least 1 hour. Please plan to arrive 15 minutes before the appointment time. You do not need to fast in preparation of sample collection.
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