Free genetic testing for hearing loss is already available in the United States. Here is who may qualify, how the process works, and what families should know before and after testing.
Many families assume genetic testing for hearing loss is expensive, hard to arrange, or only useful for research. For a large group of people in the U.S., none of that has to be true. A sponsored program called Resonate offers free genetic testing for hearing loss, along with genetic counseling, to eligible individuals at no cost to them, their insurance, or their healthcare provider (PreventionGenetics, n.d.).
The timing matters. In 2026, the U.S. Food and Drug Administration approved the first gene therapy for a form of genetic hearing loss, and that therapy is only for people whose genetic cause has been confirmed through testing (FDA, 2026). A genetic diagnosis is no longer only an answer to the question “why?” For some families it has become the first step toward knowing which options might apply.
In short: Eligible people under 40 in the U.S. with sensorineural hearing loss or auditory neuropathy can receive genetic testing and counseling through Resonate at no charge. A healthcare provider arranges it, the sample is usually a cheek swab, and results typically return in three to four weeks.
What the Resonate program is
Resonate began in 2021 as a partnership between the gene therapy company Akouos and Blueprint Genetics. It originally focused on auditory neuropathy, a type of hearing loss in which sound reaches the inner ear but signals do not travel normally to the brain (Hearing Health & Technology Matters, 2021). Akouos later became part of Eli Lilly and Company, which now sponsors the program.
Today, genetic testing is performed by the laboratory PreventionGenetics, and genetic counseling is provided by InformedDNA. According to the program, Lilly pays for both testing and counseling in the U.S. (PreventionGenetics, n.d.; Resonate, n.d.).
Who may be eligible
Eligibility depends on age, location, and the type of hearing loss. As listed by the testing laboratory at the time of writing (PreventionGenetics, n.d.):
| Where | Age | Type of hearing loss |
|---|---|---|
| United States | Under 40 | Sensorineural hearing loss in one or both ears, from mild to profound, or auditory neuropathy |
| Brazil and Mexico | Under 18 | Severe or profound sensorineural hearing loss in both ears, or auditory neuropathy |
The program states that its U.S. eligibility was expanded and informed by recommendations from the International Pediatric Otolaryngology Group and the American College of Medical Genetics and Genomics (Resonate, n.d.). Criteria can change, so the program itself or a genetic counselor is the best source for a final answer.
How free genetic testing for hearing loss works
Families do not order the test directly. A healthcare provider starts the process, and there are two common routes.
Route 1: A provider orders the test
A physician or other qualified provider can order a test kit through the PreventionGenetics Resonate portal. The preferred sample is a buccal swab, which collects cells from the inside of the cheek. No blood draw is usually needed (PreventionGenetics, n.d.).
Route 2: A referral to a genetic counselor
Providers, including audiologists, can refer patients to genetic counselors at InformedDNA. The counselor explains testing before it happens, arranges the order, and walks through the results afterward (Resonate, n.d.).
What the lab looks at
The laboratory lists a panel of 274 genes associated with hearing loss (PreventionGenetics, n.d.). A panel test looks at many genes at once, which matters because hearing loss can be caused by changes in hundreds of different genes, and two people with similar hearing tests may have entirely different genetic causes.
How long it takes
The ordering provider usually receives results within three to four weeks after the laboratory receives the sample (PreventionGenetics, n.d.).
Why a genetic diagnosis matters more now
For years, the main benefits of genetic testing for hearing loss were an explanation, information about inheritance, and awareness of related health conditions that sometimes accompany certain genes. Those benefits remain important. Two developments in 2026 added more.
First, the FDA granted accelerated approval to Otarmeni, a gene therapy from Regeneron for severe to profound hearing loss caused by changes in the OTOF gene. The approval applies only to people with molecularly confirmed changes in both copies of OTOF, which means a genetic test result is required (FDA, 2026).
Second, gene therapy research is expanding to other genes. In August 2026, a clinical trial for hearing loss linked to GJB2, the most common genetic cause of nonsyndromic deafness, dosed its first participant (Skylark Bio, 2026). Clinical trials often require a confirmed genetic diagnosis to enroll.
A genetic result does not guarantee that a therapy or trial exists for a specific gene. It does make it possible to know, and to follow research that applies to that gene.
Understanding the results
Genetic test results generally fall into three groups (MedlinePlus, n.d.):
- Positive: A change was found that is known to cause hearing loss. This can confirm the genetic cause.
- Negative: No disease-causing change was found in the genes tested. This does not always rule out a genetic cause, because a test cannot detect every possible change.
- Uncertain: A change was found, but there is not yet enough evidence to say whether it causes hearing loss. This is often called a variant of uncertain significance, and testing relatives can sometimes help clarify it.
This is one reason counseling is valuable. A genetic counselor can explain what a specific result means for the person tested and for other family members.
Questions families often ask
Does free testing affect health insurance?
The program is paid for by the sponsor, not billed to insurance. Separately, the federal Genetic Information Nondiscrimination Act of 2008 prevents health insurers and most employers from using genetic information to make coverage or employment decisions. It does not cover life, disability, or long-term care insurance, and it does not apply to employers with fewer than 15 employees (National Human Genome Research Institute, n.d.). Families with concerns about those areas may want to discuss them with a genetic counselor before testing.
Does a result mean a family member will have hearing loss?
Not necessarily. Many forms of genetic hearing loss are recessive, which means a child can have hearing loss even when both parents hear typically. A counselor can explain how a specific result may apply to siblings, parents, or future children.
Is testing required to join a clinical trial?
Many gene therapy trials require a confirmed genetic diagnosis, but requirements differ from study to study. Testing alone does not enroll anyone in a trial.
Where can I learn more about testing options?
Our Genetic Testing Resources page lists laboratories and programs that offer hearing loss genetic testing. For an overview of today’s treatment options, see Three Approaches to Hearing Loss.
A practical next step
If you or your child has sensorineural hearing loss and may be eligible, the simplest first step is to ask your audiologist, ear, nose, and throat physician, or pediatrician about genetic testing and whether a Resonate referral makes sense. Bring any hearing test results you have, and ask how the results would be shared and explained.
This article is provided for general educational purposes and does not offer medical advice. Rescue Hearing does not operate the Resonate program, and mentioning it is not an endorsement. Program details, eligibility, and availability are set by the sponsor and may change. Questions about testing or treatment should be discussed with qualified hearing, medical, and genetics professionals.
References
Hearing Health & Technology Matters. (2021, January 11). Akouos and Blueprint Genetics announce Resonate program to improve access to genetic testing for auditory neuropathy.
MedlinePlus. (n.d.). What do the results of genetic tests mean? National Library of Medicine.
National Human Genome Research Institute. (n.d.). Genetic discrimination. National Institutes of Health.
PreventionGenetics. (n.d.). No-charge genetic testing and counseling program for sensorineural hearing loss.
Resonate. (n.d.). Resonate: A program to improve access to genetic testing. Eli Lilly and Company.
Skylark Bio. (2026, August 11). Skylark Bio doses first patient in SONIX Phase 1/2 trial of SKY-GJB2 for GJB2-related pediatric deafness. BioSpace.
U.S. Food and Drug Administration. (2026, April 23). FDA approves first-ever gene therapy for treatment of genetic hearing loss under National Priority Voucher program.