An Assessment of the Use and Impact of Genetic Testing Among Deaf Adults and Parents of Deaf Children
Hearing loss is a common human sensory disorder affecting millions globally, and many cases are due to a genetic etiology. Genetic testing for hearing loss is evolving as new genetic tests and genes related to hearing loss emerge; however, there has been limited research on how testing for hearing loss is impacting individuals. The purpose of this study was to assess how genetic testing for hearing loss influences decision making regarding medical management, language development, education, family planning and spouse selection by deaf adults and parents of deaf children as well as the impact on their emotional well-being. An anonymous online survey was created to assess experiences with genetic counseling and genetic testing for hearing loss. Study participants were recruited through online national organizations and social media advocacy groups, and 84 responses were analyzed. Hearing parents of deaf children were more likely to make post-genetic testing decisions regarding their children’s medical care and language development than deaf parents did for their children or themselves. Family planning decisions were made less frequently, but there were still 31% of deaf adults and 36% of parents of deaf children whose family planning was influenced by their test results. Individuals with, and parents of children with syndromic deafness were significantly more likely to make medical and family planning decisions after genetic testing than were participants or parents of children without a syndrome. Genetic testing revealed a diagnosis more frequently in deaf children than deaf adults, and deaf children also received genetic counseling more often than deaf adults. Respondents were more likely to have an overall positive affect than a negative or neutral affect post-genetic testing on the Positive and Negative Affect Schedule (PANAS). The results of this study illustrate the diversity of impact that genetic testing for hearing loss has on individuals and families and highlights the need for more exploration into the utilization of genetic test results as more genes and genetic tests for hearing loss emerge.