Genetic Hearing Loss

At UI Health Care, we provide comprehensive evaluation, genetic counseling, genetic testing, and management for genetic causes of hearing loss and deafness.

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For Otolaryngology related requests:

1-319-356-2201

For all other requests:: 1-800-777-8442

Most hearing loss that starts from birth or early childhood is due to genetics. Genetic causes can also explain hearing loss that starts in adulthood, especially if no other cause has been found. A family history of similar hearing loss sometimes provides a clue that hearing loss is genetic but for many families no close relatives have hearing loss. Even with no family history, hearing loss can be genetic.

University of Iowa Health Care is home to world-recognized experts in hearing loss genetics and genetic counseling. Our experts offer the only hearing loss-focused genetics clinic in Iowa and the Department of Otolaryngology is one of only a few otolaryngology departments across the nation with a genetic counselor dedicated to hearing loss.

Our specialists will help determine the genetic cause of your or your child’s hearing loss, provide support to understand and process the diagnosis, and assist in health care decision-making. They will also help you understand the chance of hearing loss in other family members, including future children.

Comprehensive, personalized care for genetic hearing loss

Our hearing loss experts provide a thorough physical evaluation and review of you or your child’s condition, current symptoms, and family and medical history to provide the most accurate diagnosis and design the most beneficial treatment plan.

Our experts also work collaboratively with team members from different disciplines toward shared goals, resources, and responsibilities. They believe communication between your family and your team is the key to success and work to share all information with you and your providers.

Trusted experts in hearing loss genetics

UI Health Care’s otolaryngology department collaborates with the Molecular Otolaryngology and Renal Research Laboratories (MORL). Together, we have over 100 years of combined experience in the genetics of hearing loss—a reputation that is recognized worldwide.

Leaders in genetic hearing loss research

At UI Health Care, we are committed to advancing the well-being of individuals with hearing loss and their families. Here’s how:

We actively engage in research to identify genes responsible for hearing loss. Our contributions have played a role in pinpointing over 20% of the known hearing loss genes.
We focus on designing more effective genetic tests. By doing so, we aim to provide accurate genetic diagnoses for hearing loss, which can lead to better, personalized care.
We study how hearing loss evolves for individuals from diverse genetic backgrounds, helping to better inform our approach to patient care and provide each person prognostic information about their hearing loss.
We conduct clinical trials that explore groundbreaking treatments such as gene therapy. Our ongoing projects, such as the OTOF (otoferlin) gene-related hearing loss natural history and gene therapy study, hold promise for patients and families worldwide.

Our approach to care

We take a personalized, transparent, and collaborative approach to every appointment. More like a conversation between you and/or your family and the members of our team, we help patients beyond the diagnosis or potential diagnosis to consider how hearing loss may impact your family, what support may be helpful, and how to help you thrive.

What to expect

Our goal is to help you feel supported and well-informed throughout the genetic counseling and testing process.

During your visit, you will meet with an otolaryngologist with expertise in genetic hearing loss and our genetic counselor. Our genetic counselor will explain how genetic testing works and what information it can provide, so you can decide if testing is right for you. In this meeting you will discuss:

Medical history. We will discuss you or your child’s medical and family history to help determine which tests are needed.
Physical exam. Our otolaryngologist will perform a physical exam and an ear exam. They will also review any current symptoms you or your child are experiencing.
Testing options. We will discuss available tests, including genetic tests, imaging tests such as MRI (magnetic resonance imaging) and CT (computed topography), hearing tests, and more. Our team will help you understand which test(s) might be most suitable, based on your symptoms and family history.
Costs. We can help you determine which tests are covered by your insurance company. We can also help you figure out which tests would require you to pay some or all the cost.
Expectations. We will discuss the information genetic testing can provide and how that information can be used. We will help you and your family decide if genetic testing is the best thing for you and your family.

Genetic testing

If you decide to move forward with genetic testing, we will take a sample of blood or saliva, or swab a cheek, for testing. The type of sample depends on the type of recommended genetic testing.
We will give you a timeline for when you can expect your test results to come in. Once we have received the results, we will schedule a time to review them with you.

Results and recommendations

When we have your test results, we will meet to discuss the results and create a personalized plan. We will also talk with you and your family about the diagnosis and answer any questions you may have.

If indicated, we will refer you or your child to other otolaryngology specialists, including our Hearing Aid Center, cochlear implant team, or the Ophthalmology-Otolaryngology (Eye-Ear) Genetics Clinic. If you are planning on receiving ongoing care locally, we will share your treatment plan with your primary care physician, otolaryngologist, audiologist, or other providers. However, we are always available to answer any questions you may have.

If testing identifies other family members who may need care, we will coordinate with you and family members to make this process convenient.