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  • Writer's pictureSociety of Bioethics and Medicine

Therapy or Threat?

By - Marium Ghobriel, Edited By - Melissa-Maria Kulaprathazhe

Deaf culture is one that is rich in history, values, and tradition, and one that embraces deafness as a unique experience of life rather than as a disability or setback. In a world where the majority of people can hear, this community is often overlooked and even discounted. From a medical standpoint, physicians and loved ones are eager to implement remedial measures like surgery and speech therapy; over the course of history, sign language was even discouraged because people feared that it would discourage deaf people from improving their auditory and speech development. With the novel development of gene editing, will the decline in those who use sign language be considered a cultural threat? Moreover, is it a violation of a child’s right to choose how they identify?

Let’s take for example a deaf child that received a cochlear implant may be able to hear after the operation, but he still resonates with the Deaf community as he grew up being deaf in a hearing world. When parents-to-be choose to have their child undergo gene therapy, the possibility of their child being able to participate in Deaf culture is significantly limited. The child has lost the choice to embrace being deaf as well as the ability to surround himself with others just like him; he has essentially lost a part of his identity as a result of his parents’ decision for him to undergo a genetic modification.

The National Association of the Deaf have argued that research with the goal of curing deafness should be considered “cultural genocide”. Regardless of whether one considers the Deaf community to be a culture, gene therapy would eventually lead to less deaf children, less people using sign language, and jeopardize the Deaf community as a whole. However, is researching a treatment for what is medically considered a disability inherently discriminatory? These efforts are done with good intentions, but are scientists and medical professionals crossing a boundary established by deaf people?

Gene therapy is the most appealing to parents expecting a deaf child. However, this process is costly and accessible to only an affluent minority. If using this therapy will allow a child to have a relatively easier time growing up and participating in society, how can one resist this option? This is a popular perspective of hearing people, who cannot see the advantages of being deaf. It is also important to consider whether the mindset of “being normal is better than being abnormal” is insensitive and/or offensive. Deafness is not a life-threatening condition, so shouldn’t the child have the choice of whether they would like treatment to be able to hear or not? Or, is it more morally sound for parents to go through with gene therapy to guarantee a childhood free of hardships that accompanies being deaf?

The world we live in today is one that is learning to accept, love, and take pride in not being considered “normal.” Spreading awareness and preaching tolerance have never been as prevalent as is it right now, and Deaf culture is currently at its prime. Using gene therapy to rid of the possibility of bearing a deaf child should be reevaluated, or perhaps be accepted on a case-by-case basis. Over 70 million deaf people worldwide primarily use sign language. To cause this number to plummet would erase decades of solidarity within the Deaf community and infringe on a child’s autonomy in regards to how they identify.


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