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Deciding Whether to Get Genetic Testing

Is it important to know if my child's hearing loss is genetic?
Some people want to know the reason for their child’s hearing loss. Other people say it doesn't matter. Think about whether you want to get genetic testing.

Some reasons why you may want to know if your child's hearing loss is genetic:

  • With some genetic types of hearing loss, other medical problems may also occur. If you find out your child has one of these types of hearing loss, it may help you catch problems before they become too serious.
  • Learning the specific genetic cause of your child’s hearing loss may tell you if it is likely to get worse over time. It may also tell you what treatments are likely to be helpful.
  • If you want to have another child, you may want to know what the chances are that other children will also have a hearing loss.
  • Learning your child’s hearing loss is genetic may help you understand that your child’s hearing loss is not from something you did wrong.

Some reasons why you wouldn't want to know if your child’s hearing loss is genetic:

  • Some people fear that learning the hearing loss is genetic will upset other people in the family.
  • Some people think that knowing if the hearing loss is genetic isn't worth the extra testing and counseling that will be needed.
  • Some people say it just does not matter to them why their child lost his hearing.
  • Some people fear that if the hearing loss is genetic, their child will be treated differently or have problems with insurance or getting a job.
  • Genetic testing may not tell you why your child is deaf. This can be frustrating.

Talk to a genetic counselor if you are thinking about getting genetic testing.

  • The genetic counselor can answer your questions about genetic testing.
  • You can talk to her about the risks and benefits.

Ask your doctor or audiologist to refer you to a genetic counselor in your area. Or contact The National Society of Genetic Counselors.

Next: Are all genetic forms of hearing loss the same?

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