Genetic counseling for deaf adults: Communication/language and cultural considerations

Abstract

It has been estimated that at least 50% of congenital or early onset deafness loss has a genetic etiology. Genetic services have traditionally been utilized by hearing parents of deaf children. Deaf adults could also greatly benefit from genetic counseling services. However, many deaf adults do not seek genetic services due in part to the communication/language and cultural differences of this group. Deaf people communicate in various ways including the use of sign language, oral communication, writing, or a combination of these modes. Also, while some deaf individuals are part of the hearing culture, others are part of the Deaf culture which has its own language, values, and traditions. Culturally Deaf individuals do not see themselves as handicapped or disabled. The genetic professional's awareness of the communication/language and cultural needs of this group, as well as their agency's responsibilities under section 504 of the Rehabilitation Act of 1973, may increase the accessibility of genetic services and contribute to the provision of successful genetic counseling for deaf adults.