The purpose of a genetics exam or genetic testing is to find out if the cause of your child’s hearing loss is genetic. About half of all hearing loss in babies is genetic. This means that the hearing loss is caused by changes in genes. Genes contain the instructions that tell a person’s cells how to grow and work. Sometimes a change in a gene can cause hearing loss. Hearing loss can also be caused by infections, premature birth, and other factors in the environment. For many children, however, the cause of hearing loss is not known.

A “genetics team” is made up of a clinical geneticist, a genetic counselor, and other health care professionals. A clinical geneticist is a doctor who specializes in diagnosing and caring for people with genetic conditions. A genetic counselor is a health care professional who talks with people about the risk for genetic conditions and provides counseling and support. Members of the genetics team work together during a genetics exam.

Members of the genetics team will ask you questions and give your child a thorough physical exam to try to find the cause of your child’s hearing loss. They may recommend that your child have a blood test. They may also ask that you have a blood test. They may suggest that your child see another doctor or specialist to help them better understand the cause of your child’s hearing loss. Knowing the cause might help you and your child’s doctors better understand your child’s health care needs. It might also give you and your family information about the chance of having other children with hearing loss. Sometimes the cause of a child’s hearing loss cannot be found, even if the child has a genetic evaluation.

The genetics team will work together to offer the best advice and care for you and your child. Please remember that you may not always be referred to a genetics team for your child’s genetics evaluation. So, you may also want to consider asking your ENT the following sample questions.

line drawing of a geneticist and dna strand

Questions to ask your geneticist:

  1. What will the genetic exam and genetic testing tell me about the cause of my child’s hearing loss? What are some common genetic causes of hearing loss?
  2. What will the results of genetic testing tell me? How can this information help my child?
  3. How will genetic tests be done? What other kinds of tests might be done to find out the cause of my child’s hearing loss?
  4. Can the results of genetic testing tell me if my child’s hearing loss will get better or worse?
  5. Why is it important to know if members of my family have had hearing loss and what type they had? How can hearing loss be inherited?
  6. If no one in my family has hearing loss, how can my child’s hearing loss be genetic?
  7. Should my other children have genetic testing, too? Why?
  8. If I have another child, what is the chance that he or she will also have hearing loss?
(Sample questions adapted from the Department of Health and Human Services, Centers for Disease Control and Prevention.