Ethical Considerations in Genetic Testing for Hearing Loss

Abstract

As described in the preceding articles, exciting advances in the identification and characterization of genes for hearing loss are occurring at a very rapid pace. Progress in understanding the genetic basis of many forms of hearing loss generally reflects the rapid progress occurring in all areas of genetics with technologies made possible, in part, by the Human Genome Project. New discoveries regarding specific forms of hereditary hearing loss have already had an impact on the genetic counseling and evaluation process. Clinical geneticists, genetic counselors, and family members alike have eagerly embraced the increasing availability of genetic tests for specific forms of hereditary deafness. In many situations, these tests have allowed geneticists to provide much more accurate information about the cause of the hearing loss and the expected clinical course and have opened up new options to families to make choices that may have a profound affect upon their lives and the lives of their children. These choices can be empowering, and at the same time, overwhelming. The decisions families and individuals make about having genetic testing and the actions they subsequently take based on the information garnered from that testing vary from situation to situation and may depend upon the medical considerations such as the severity of the condition or the availability of treatment, or personal considerations such as cultural orientation, religious beliefs, or life experiences. Many professionals and consumers have questioned the appropriateness of genetic testing and ethical concerns have become evident in situations involving testing for various genetic conditions. With the recent availability of genetic testing for specific forms of hearing loss, we are now faced with many of the same ethical issues for hereditary deafness. The existence of cultural and linguistic differences among individuals who are deaf lends uniqueness to the discussion of the ethical implications of genetic testing. It is important for speech and hearing professionals to understand some of the ethical implications of genetic testing for deafness and the role that genetic counselors and other genetics professionals play in the testing process. Speech and hearing professionals also play an important role in ensuring that appropriate referrals are made and that families receive adequate support during the process.