Gene Therapy for Hearing Loss

I attended the Pennsylvania Genetic Counseling Conference this week. There were many thought-provoking sessions. However, one session really had me thinking about the cultural implications of gene therapy. Deaf culture could be negatively impacted by decreased numbers if gene therapy for hearing loss becomes more prevalent. The presenter at the conference shared that 90% of individuals with hearing loss are born to hearing parents. In addition, there may be a critical period for hearing loss gene therapy, which occurs well before individuals with hearing loss are able to provide informed consent. This could lead to a situation where fewer people enter the Deaf community because of early life choices made by hearing parents. While this appears enough to unpack and contemplate, the presenter provided additional food for thought.

If gene therapy for hearing loss becomes more prevalent and individuals or their parents decide not to proceed with gene therapy, would they lose the ability to receive accommodations or services? Would institutions (government agencies, school systems, or employers) start to view gene therapy for hearing loss as an expected treatment? My sense is that gene therapy could be viewed as a mitigating measure. The U.S. Department of Education defines mitigating measures as “things like medications, prosthetic devices, assistive devices, or learned behavioral or adaptive neurological modifications that an individual may use to eliminate or reduce the effects of an impairment.” Fortunately, the amendments to the Americans with Disabilities Act (ADA) clarify that the positive effects of mitigative measures can not be considered when determining when someone has a disability. One exception to this is “ordinary eyeglasses or contact lenses.” Individuals who use this common type of mitigating measure are not considered individuals with disabilities/impairments. Setting glasses/contacts aside, gene therapy appears to be a mitigating measure; therefore, individuals who choose not to use such measures should still be considered eligible for accommodations and services. However, time will tell how society views these treatments and their future implications.