I’m a deaf mom raising a deaf child. CHOP’s gene therapy for deafness has me worried.

Earlier this year, researchers out of Children’s Hospital of Philadelphia announced a “breakthrough” in treating hearing loss, using gene therapy to restore hearing to an 11-year-old congenitally deaf boy, Aissam Dam.

The CHOP trial is one of five across the globe, all aimed at restoring hearing. Being the first such trial in the U.S., the news media and medical community heaped praise on the experiment, but this is only one side of the story.

As a deaf person and the mom of a deaf son, I’m concerned about the physical, educational, social, and ethical implications of this research, and I believe other folks outside our community have reason to be wary, too.

First, some concerns about the patient’s background.

Aissam grew up in Morocco without access to schooling and used self-invented signs to communicate. He only began to go to a school for the deaf and learn Spanish Sign Language three years ago, when his family moved to Barcelona, Spain.

This is significant because deaf children who aren’t exposed to language in the critical window of development — up to the age of 5 — are at high risk of language deprivation, which can cause permanent cognitive damage and limit one’s ability to speak or understand a language. Because Aissam didn’t receive technological interventions like a cochlear implant in that same window, his brain will also have limited capacity to learn how to process the sounds he now accesses via his “restored hearing” — in other words, he can hear, but not understand.

As a result, I have myriad ethical questions about Aissam’s participation in the trial. Because of his language deprivation, what did he understand about the risks, benefits, and overall meaning of his participation? His lack of exposure to auditory input early in life has limited the functional benefit of the treatment. What’s more, is it appropriate to experiment on Aissam, or minors in general, who cannot consent to their participation, particularly in trials that don’t address life-threatening conditions, or even provide significant benefits? While parents can give legal consent, the fact that these treatments are elective, experimental, and don’t address a life-threatening condition should raise alarm bells about protections of patient bodily autonomy.

In addition, I have concerns about how this trial could impact the rest of Aissam’s life. A test of Aissam’s hearing — known as an audiogram — shows his hearing sensitivity is now nearly normal, even though he still cannot — and likely will never be able to — understand speech. As deaf people, we are routinely required to present our audiograms to receive access to deaf education, accommodations, and related government services. But if a patient’s audiogram looks normal after gene therapy, they could be automatically disqualified for these resources. Have the researchers created a robust plan to help Aissam and other children with restored hearing access education and receive the accommodations they need as deaf people?

More broadly, what will happen to all other deaf people — children and adults — whose hearing cannot be restored by these treatments, but whose community, resources, and generational knowledge will be diminished by the shrinking of the deaf population?

At the crux of the conversation about treatments to restore hearing is always the notion of choice. However, the vast majority — over 90% — of deaf children are born to hearing parents, so this choice is mostly not in actual deaf people’s hands at all. And if parents are not offered accurate and complete information about both the deaf experience and the functional outcomes of treatment, as is already often the case in medical settings with respect to deafness, the “choice” is lopsided at best.

While I don’t believe deaf folks will be rounded up by the U.S. government for compulsory therapy, when this technology is perfected and viewed as an easy and cost-effective “fix,” I do worry that our rights and protections under existing laws — such as the Americans with Disabilities Act — and the Individuals with Disabilities Education Act, which guarantees our right to education that meets our needs — will be stripped away. Without these safeguards in place, deaf people will be exiled from public life until we elect to be treated. It’s not a choice if there’s only one option.

It’s not a choice if there’s only one option.

What’s missing from treatments that “cure” deafness are meaningful dialogues between the researchers and the communities they seek to eradicate. While this technology isn’t going away, scientists are also not required to implement every technological advance they discover immediately, and with as broad an application as possible, just because they can. Nor should they use deaf and disabled children — particularly marginalized immigrant children of color — as guinea pigs for the work, in hopes that their sacrifices might have useful future applications in treating actual diseases.

Being deaf in a hearing world presents some barriers, of course. But for me, deafness has been an overwhelmingly positive part of my life. I am a better problem solver, and a more creative writer, because of my deafness, not in spite of it. My experience as a deaf person makes me a more empathetic parent and fiercer advocate for both my sons. Many deaf and hard-of-hearing people feel our hearing loss is, in fact, a “deaf gain.” We have a rich culture, a vibrant community, and a beautiful language in American Sign Language, all of which are inextricable from the fact of our deafness.

» READ MORE: Gene therapy at CHOP allowed a deaf boy to hear. But some deaf people object to the treatment.

I’ve worked hard to give my own son the languages, technology, and knowledge he needs to thrive in both the hearing and deaf worlds. But providing him with resources is not the same as seeking to change the very fiber of his being, and I know from experience that hearing isn’t a requirement for leading a full and successful life. Even at a tender age, he is outspoken — in both ASL and English — in his pride for our deaf community. So, if my son is still a minor when the day for choosing whether or not to restore his hearing comes, I will choose all of him, as he is. Just as I do with my hearing son, I will continue to affirm my deaf child’s sense of self and support his needs, not teach him that his genes, culture, and worldview are things to be stamped out. And if, as an adult, hearing is something he’d choose to pursue, I’d support that, too, because I believe bodily autonomy matters.

How do we weigh the value of “progress” against the eradication of language, culture, and the beauty and power of a heterogeneous society? Where is the line demarcating when it is and isn’t appropriate to remove varieties of human diversity from the population? Who gets to draw the line, and who protects it?

To all the hearing people reading this, I ask: Is there an element of your own identity that brings both difficulty and joy to your life? Would you delete that part of you if you could?

If you believe the things that make all of us unique are worth keeping, I ask that you consider the issues raised by gene therapy to correct hearing loss and amplify deaf and disabled voices in these discussions going forward. And don’t pretend that we are the only community that will be affected. Deaf people may be an early target of this new wave of therapy-fueled eugenics, but we won’t be the last.

Sara Nović is a writer and translator based in Ambler. Her book, “True Biz,” was recently chosen for this year’s One Book, One Philadelphia.