Genetic Counseling for Deafness

7. Summary

Genetic counseling is the process of providing information to families about a genetic condition such as deafness in an atmosphere that is non-directive, supportive, and sensitive to the special needs of individuals. Professionals who provide health care and services to deaf and hard of hearing children and adults are essential to the referral process. Genetic counseling includes the collection of medical and family history information, a physical examination by a certified clinical geneticist, referral for genetic diagnostic tests offered on a research or clinical basis, and referral and follow-up for any medical conditions that are found to be associated with the deafness. Families are also provided with detailed information regarding the cause of the deafness, treatment options and reproductive implications, and are given support and guidance in making decisions about these options. The availability of genetic testing for many hereditary forms of deafness has improved the ability of genetic counselors and clinical geneticists to provide accurate information to families. However, there are many ethical implications of this type of testing yet to be explored. These considerations are particularly important given that some deaf people identify themselves as being part of a separate cultural group based on their deafness.