Why is genetic testing helpful?
If you are visiting this website, chances are you suspect that you or a family member has Usher syndrome. The only way to know for sure is through genetic testing. Knowing can lead to improved decisions about treatment and management. In addition, genetic testing can help determine if other problems related to Usher syndrome besides hearing loss may be present or may develop in the future.
In addition to improved treatment choices, genetic information may help in other ways. Genetic testing can provide an individual or the parents of a child with the satisfaction of understanding the cause of certain physical issues. It can also be useful when making reproductive choices because once a genetic cause is identified, it is then possible to predict the likelihood that future children of that person will also have Usher syndrome. In general, how people use genetic information will vary widely depending upon individual perspectives about hearing loss, religious beliefs, and other factors.
Regardless of how the genetic information is used it can be an overwhelming and stressful experience for people to learn that a mutation in their own genes is the cause of their child's situation. It should be remembered, however, that genetic mutations are very common. All people carry gene mutations that might affect their health or physical characteristics. Mutations in some genes may cause medically important conditions, while others explain many of the normal differences between people. No person is responsible for the particular genes he or she possesses.
These benefits and drawbacks of genetic testing must be understood by anyone considering testing so that an informed decision about testing can be made. Genetic counselors are skilled in educating others about genetic testing and its many associated issues. You should feel free to contact a counselor or doctor if there is any information about genetic testing that is unclear, or if you would like to discuss your particular situation.