• Through your participation in this study, you may be able to learn if your deafness is due to Connexin 26 or Connexin 30 genes.

• In addition, your pariticipation will provide valuable information on the usefulness and appropriateness of genetic testing to deaf and hard-of-hearing people.

• There are different types of deafness. The primary focus of our study is on the sensorineural type. It is important to first learn if your deafness is of this type. We would ask you to have some audiological tests that will be conducted by our reserach team to learn if you have this type of deafness. You wil be asked to fill out a questionnaire on the same day.

• When people undergo genetic testing, they generally meet with a genetic counselor first to discuss the benefits, risks, and limitations of the test. In this project, a genetic counselor will discuss the option of testing two genes called Connexin 26 and Connexin 30. You will be asked to fill out another questionnaire.

• If you would like to have the Connexin 26 and Connexin 30 genetic tests, we will gently rub the inside of your cheeks with a small soft brush to obtain cells from your mouth.

• We will ask you to return to meet with a genetic counselor who will give you the Connexin 26 and Connexin 30 genetic test results and will explain to you what they mean.

• We will ask you to complete two follow-up questionnaire at home about 1 month and 6 months after you receive the genetic test results.

• If you decide you do not want to have the Connexin 26 and Connexin 30 tests, your opinions are still welcome and you can still participate in the study by filling out questionnaires.

• No matter if you are the only person or one of many people in your family who is deaf or hard-of-hearing, you may be eligible to participate as long as you have been deaf or hard-of-hearing since birth or early childhood. You must also be at least 18 years old to participate in this project.

• Your participation is entirely voluntary and all the information will be kept strictly confidential.

• All the testing and counseling is done at no charge and can take place at either University of California, Los Angeles (UCLA) or at California State University, Northridge (CSUN).

• The risks of taking any type of genetic testing may include anxiety about learning test results, possible disruption of family relationships, changes in reproductive choices, potential loss of employability or insurability, stigmatization as well as other unforeseen risks.

• Genetic discrimination is ILLEGAL in California, you can learn more at:

[PDF File]
National Conference of State Legislatures: Genetics Laws and Legislative Activity

National Society of Counselors: Genetic Information, Privacy & Discrimination