A toddler born with a severe neuromuscular disease takes their first steps. A woman born blind sees a sunset emblazoned across a mountain valley her friends used to have to describe to her. A child born deaf hears their mother sing a soothing lullaby for the first time.
The advent of gene therapy has made these once science-fiction fantasies a near-reality. Instead of treating symptoms, gene therapy corrects the root cause of genetic disorders by inserting new genetic material into patients who have nonfunctional or harmful versions of genes. Remarkably, these therapies have shown positive results in both preclinical models and human clinical trials across many diseases [1]. While the doctors and scientists who have made this possible tout them as the future for once untreatable diseases, for some with these diseases, the answer may not be so clear.
For many born without the ability to hear, being deaf is more than just a pathology, it is a culture, complete with its own language and societal standards. Being a part of the Deaf (distinguished by the capitalized D) community can be akin to other cultural identities like ethnicities or religions. Though deafness can be recognized as a disability from a legal and medical standpoint, some Deaf people believe that being deaf is not a disability at all. They propose that since deaf people can do anything hearing people can do, including communicate, they are not disabled in any way. This viewpoint brings about a question that may be unique to those with genetic deafness as opposed to other genetic disorders: Is a cure needed or wanted?
Years before the advent of gene therapy, some in the Deaf community have opposed other “cures” for deafness like cochlear implants [2]. They argue that these devices are not cures, since when removed, the user remains deaf. However, the recent success of gene therapy may challenge these arguments in a way not seen before. In early 2025, two research groups reported that a single injection in deaf children with DFBN9 (a congenital deafness) could allow them to hear for the first time [3,4]. Unlike cochlear implants, gene therapy is internalized and could be permanent. While many hurdles must still be cleared before gene therapy is widely available (including therapies specific for the many genes that cause deafness), a world where genetic deafness could be curable may be on the horizon.
Although these new therapies may circumvent some issues the Deaf community had with previous treatments for deafness, the root question of deafness as a disability is still present. The answer to this question may never be answered definitively, but research to treat the many types of genetic deafness will continue. The therapies that will be developed will ultimately give those in the Deaf community the right to choose whether to undergo these groundbreaking procedures or not. When a cultural identity is at stake, the availability of a choice is of upmost importance.
References
- Wang, JH., Gessler, D.J., Zhan, W. et al.Adeno-associated virus as a delivery vector for gene therapy of human diseases. Transduc. Target Ther. 2024, 9, 78. https://doi.org/10.1038/s41392-024-01780-w
- Aldè, M.; Ambrosetti, U.; Barozzi, S.; Aldè, S. The Ongoing Challenges of Hearing Loss: Stigma, Socio-Cultural Differences, and Accessibility Barriers. Res.2025, 15, 46. https://doi.org/10.3390/audiolres15030046
- Qi, F. Tan, L. Zhang, L. Lu, S. Zhang, Y. Zhai, Y. Lu, X. Qian, W. Dong, Y. Zhou, Z. Zhang, X. Yang, L. Jiang, C. Yu, J. Liu, T. Chen, L. Wu, C. Tan, S. Sun, H. Song, Y. Shu, L. Xu, X. Gao, H. Li, R. Chai. AAV-Mediated Gene Therapy Restores Hearing in Patients with DFNB9 Deafness. Adv. Sci.2024, 11, 2306788. https://doi.org/10.1002/advs.202306788
- Lv, H. Wang, X. Cheng, Y. Chen, D. Wang, L. Zhang, Q. Cao, H. Tang, S. Hu, K. Gao, M. Xun, J. Wang, Z. Wang, B. Zhu, C. Cui, Z. Gao, L. Guo, S. Yu, L. Jiang, Y. Yin, J. Zhang, B. Chen, W. Wang, R. Chai, Z. Chen, H. Li, Y. Shu. AAV1-hOTOF gene therapy for autosomal recessive deafness 9: a single-arm trial. The Lancet. 2024, 403 (10441), 2317-2325. https://doi.org/10.1016/S0140-6736(23)02874-X.
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This article provides a nuanced look at the complex relationship between deafness, identity, and medical advancements like gene therapy. It thoughtfully highlights the communitys perspective on disability and the importance of choice.Nano Banana free