Gene therapy restored hearing in deaf patients

Here's a summary of the themes discussed in the Hacker News conversation, presented with markdown headers and supporting direct quotes:

Gene Therapy as a Cure vs. Cultural Identity

A significant portion of the discussion revolves around the implications of gene therapy for deafness, particularly in the context of the Deaf community and its culture. Many users question whether curing deafness is a universally positive advancement or if it poses a threat to a distinct cultural identity and community.

"This is all humans doing work and building knowledge, much like it has always been. Can you point to a specific section of the article that elicits that assumption?" asked fao_ in response to a user's mention of the singularity, highlighting the human-driven nature of scientific progress.
"Controversial in the same way cochlear implants are. Many deaf/Deaf parents want children who hear. And I think absent the cultural consideration, almost all would want children who hear. But you can't ignore the cultural consideration. If you are deaf, and have a deaf child, curing that child's deafness means they will move away from you later in life." stated retrac, outlining the core tension between personal desire for a cure and cultural preservation.
"But for people from such families, and who live in a culturally deaf world -- they are not disabled. The cultural environment they live in is ... one in which deafness is not disabling. And it's going to be a very high hill to climb to convince them that they are missing something. They certainly don't feel it." retrac further elaborated on the idea that within their cultural context, deafness is not perceived as a deficit.
"There are few things that make me angrier than trying to hold back cures for deafness because of 'cultural erasure' or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book." bigstrat2003 expressed strong opposition to the notion of prioritizing community over a cure, framing it as "objectively evil."
"My gripe is people aren't asking the obvious other questions: 1. What are the positive aspects of deafness? 2. What are the different aspects of deafness (neither positive nor negative, but leads to a very different human experience)? If either of these significantly outnumber the negative aspects, I can see why imposing a treatment on children without the parent's consent is problematic." BeetleB posed questions aimed at understanding the non-negative aspects of deafness.
"We can and should, the same way we ignore the corresponding 'cultural consideration' that mothers who have undergone female genital mutilation themselves will feel alienated from their daughters if they do not inflict the same treatment on them." akoboldfrying drew a strong parallel between FGM and the cultural argument for not curing deafness, calling the latter "abuse."
"The original commenter wanted to state that deafness can and should be seen as a natural occurrence, instead of a disability, that pushes people to better use other faculties." nashashmi explained the perspective of viewing deafness as a natural occurrence that enhances other senses.
"The research study is behind a paywall... I'm always amazed that some people still choose to publish in paywalled journals." FranckDernoncou pointed out the accessibility issue of research.
"What immediately sprung to mind is how the deaf community has seen things like this as a personal and existential threat. To me it's an obvious disability, and deaf people SHOULD want to be cured, but tribalism wins that argument all too often." froggertoaster highlighted the perceived threat to the Deaf community.

The Nature of Disability and "Differently Abled"

The discussion frequently touches upon how disability is defined and perceived, contrasting the concept of being "disabled" with being "differently-abled." There's a debate about whether certain traits or lack of capabilities are inherently negative or can be reframed within different contexts.

"I said 'not disabling', not that deafness is not a disability. Those two things mean different things to me. Obviously deaf people cannot hear. Not able. Dis-able. Deafness is a disability. But not all disabilities are generally disabling of individuals. The only disability that deafness causes is a lack of perception of sound." retrac clarified the distinction between a disability and it being "disabling" in a functional sense.
"Maybe I'm misunderstanding, but are you basically saying that there's no real negative aspects inherent to being deaf, outside of those imposed by society?" squigz questioned whether the negative aspects of deafness are solely societal impositions.
"Being an extrovert objectively gives you great advantages in (most) societies. As an introverted parent, I would definitely fight any 'cure' for my introverted children." BeetleB offered an analogy with introversion, suggesting that inherent traits, even if not always advantageous, are still part of identity.
"As someone who's on the autism spectrum, I think there's an immense qualitative and quantitative difference between someone's brain working differently and the straightforward presence or lack of a specific physical capability. I'd still be cautious because there's the long-running tendency for any kind of 'cure' for anything inheritable to be used as a eugenics bludgeon, but that's about society rather than the direct effects." crooked-v drew a distinction between neurological differences and physical capabilities.
"In this case, the lack of a specific physical ability results in that person's brain working differently." BeetleB countered, arguing that a physical lack can indeed lead to neurological differences.
"Lacking a sense that someone else has is straightforwardly negative. If being able to hear isn't better than not being able to hear, then nothing at all can be said to be better than anything else." pie_flavor argued that a lack of a sense is an inherent negative.
"I have congenital hearing loss in both ears, and wear hearing aids...I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with 'don't diss my dis-ability' PR campaigns - it still does suck every day." victorhooi shared a personal experience, reinforcing the view of hearing loss as a disability that "sucks every day."
"Why is it that some things are seen as a disability we should try to fix in our children, and others - which are in many ways just as debilitating - seen as some kind of beautiful part of humanity?" squigz questioned the selective perception of disabilities.
"In this case, the lack of a specific physical ability results in that person's brain working differently." BeetleB countered, arguing that a physical lack can indeed lead to neurological differences.
"Maybe I'm misunderstanding, but are you basically saying that there's no real negative aspects inherent to being deaf, outside of those imposed by society?" squigz questioned whether the negative aspects of deafness are solely societal impositions.

Ethical Considerations of Parental Choice and Child Welfare

A significant ethical dimension of the discussion pertains to the rights of parents to make decisions for their children versus the child's potential future autonomy and well-being, especially when concerning medical interventions like gene therapy.

"Parents and children? Sure Adults opting out of such treatments on such grounds is fine. Parents doing so to their children, not so much. I mean you can't exactly go, 'We'll wait for them to be old enough to make the decision for themselves' for hearing." og_kalu raised the issue of parental decision-making for minors.
"Abuse of deaf children. Being able to cure deafness in a child and not doing so isn't much worse than intentionally making the child deaf." UltraSane equated withholding a cure from a child with intentionally causing deafness.
"It's not a clear cut easy decision. I would say one should understand and respect the parents' decision. They know the factors way better than I do, and likely in many ways better than you do (especially as you don't know ASL)." BeetleB argued for respecting parental decisions due to their intimate knowledge of their child's circumstances.
"For me the harm inherent in this has nothing to do with whether sign languages are perceived as 'real' languages on par with spoken languages. It's obvious to me as a hearing person that sign languages are indeed 'real, full' languages, the same way written languages are, and, more generally, the same way that languages I don't personally understand but other people do, are. Sign languages are real, full languages -- and preventing a person who would be able to hear from hearing is still abuse." akoboldfrying stated that preventing a child's ability to hear is a form of abuse, regardless of the validity of sign language.
"ETA: To anyone who maintains that deaf parents should be able to prevent their children from being able to hear: Should illiterate parents be able to prevent their children from going to school? Should parents who grew up poor be able to starve their children?" akoboldfrying posed rhetorical questions to highlight the potential ethical pitfalls of parental control over fundamental life experiences.
"My kid suffers from autistic catatonia. She's also extremely high functioning. I'm sorry, there is no world where I'm going to say no thanks to a cure for my daughter's body suddenly locking into place for an unknown period of time or losing the ability to speak or function randomly or hell just understand human expression without intense intervention." iteria shared a parent's perspective on the difficult decision of seeking cures for severe conditions affecting their child.

The Value of Sensory Experience and Quality of Life

A recurring theme is the intrinsic value of sensory experiences, particularly hearing, and how their absence might impact one's quality of life. This includes the appreciation for sounds like music, nature, and everyday auditory cues, as well as the potential downsides of constant sound.

"But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't. I feel isolated by it in the same way most hearing people anticipate deafness to be as an experience. But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't. It's hard to communicate this to most hearing people. The usual response is dismissive, and unfortunately I think a lot of that ultimately goes back to very old metaphysical attitudes towards language and intelligence." retrac acknowledged the subjective nature of feeling disabled and the difficulty in communicating these experiences to those who can hear.
"The usual response is dismissive, and unfortunately I think a lot of that ultimately goes back to very old metaphysical attitudes towards language and intelligence. A lot of hearing people still don't believe, deep down, that sign languages are equivalent to spoken languages, in particular. It's just gesture. You're lacking something essential to the human condition without spoken language. Etc. But for the culturally deaf, nothing is missing from their lives, except the perception of sound." retrac elaborated on common misconceptions held by hearing people about sign language and the Deaf experience.
"This is a valid question. My gripe is people aren't asking the obvious other questions: 1. What are the positive aspects of deafness? 2. What are the different aspects of deafness (neither positive nor negative, but leads to a very different human experience). If either of these significantly outnumber the negative aspects, I can see why imposing a treatment on children without the parent's consent is problematic." BeetleB reiterated the need to consider positive and different aspects of deafness, not just negatives.
"Perhaps one advantage that even deaf people might not appreciate - being at 'peace'. There are many who can hear who crave little or no sound. Being unable to hear is a (semi?) permanent mute button. No noise, just your thoughts and whatever you can see." smaudet proposed that deafness can offer a form of peace, a "mute button" against noise.
"The biggest downside to being deaf? Missing out on omnidirectional communication. Whether that be hearing the telltale sounds of a critter in the bush, or conversing with someone without sight, that would be the major disadvantage." smaudet identified a key disadvantage in the loss of omnidirectional communication.
"I can hear, and I appreciate the convenience. However I also struggle to find auditory peace without jamming my ears with plugs, and I appreciate the calm and quiet... I'm not sure my quality of life is that much better as a result of being able to hear." smaudet expressed a sentiment of not significantly benefiting from the ability to hear and appreciating quiet.
"This is a super interesting comment, thank you. I am certainly guilty of believing the deaf experience is inferior to the hearing experience - but not because I think ASL is lesser than spoken languages or deficient as a communication channel. It's because deaf people don't hear music. I know people can dance to the beat and often distinguish songs by vibration patterns, but that is surely not equivalent to the emotional and intellectual experience most people can have listening to music." rfrey admitted to viewing the deaf experience as inferior due to the perceived inability to fully appreciate music.
"On the other hand, from my brief number of ASL lessons (about a years worth taken as an adult in my mid 20s) the facial expressiveness inherent to ASL gives it something hearing people don't get in normal conversation. But to me that's a pretty small benefit compared to the things a deaf person is missing." rfrey acknowledged a unique benefit of ASL (expressiveness) but still considered it minor compared to perceived losses.
"I feel isolated by it in the same way most hearing people anticipate deafness to be as an experience. But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't. It's hard to communicate this to most hearing people. The usual response is dismissive, and unfortunately I think a lot of that ultimately goes back to very old metaphysical attitudes towards language and intelligence. A lot of hearing people still don't believe, deep down, that sign languages are equivalent to spoken languages, in particular. It's just gesture. You're lacking something essential to the human condition without spoken language. Etc. But for the culturally deaf, nothing is missing from their lives, except the perception of sound." retrac reiterated the difficulty of communicating the Deaf experience to hearing individuals and the potential for misunderstanding rooted in deeply held beliefs about language and human experience.
"I have congenital hearing loss in both ears, and wear hearing aids...I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with 'don't diss my dis-ability' PR campaigns - it still does suck every day. I'm not saying you should discriminate against people for their disability - and I've steadfastly advocated for increased accessibility to level the playing field (e.g. in my workplace, at church, in the community). But I'm not exactly Matt Murdoch or Echo here." victorhooi shared a personal perspective on living with hearing loss, emphasizing its daily difficulties while also advocating for accessibility.
"Sure Adults opting out of such treatments on such grounds is fine. Parents doing so to their children, not so much. I mean you can't exactly go, "We'll wait for them to be old enough to make the decision for themselves" for hearing." og_kalu raised the ethical consideration of applying parental autonomy to children's irreversible sensory experiences.
"The lack of a specific physical ability results in that person's brain working differently." BeetleB countered, arguing that a physical lack can indeed lead to neurological differences.
"Can you elaborate on some of these?" squigz asked for clarification on "different aspects of deafness."
"Also, I surely hope this isn't a simple matter of numbers, right? I mean, surely one has to weigh the severity of the negative aspects in this. 'Not being able to hear' is but one negative aspect, but it's a pretty big one." squigz emphasized the importance of considering the severity of impairments, not just their quantity.
"I can hear, and I appreciate the convenience. However I also struggle to find auditory peace without jamming my ears with plugs, and I appreciate the calm and quiet... I'm not sure my quality of life is that much better as a result of being able to hear." smaudet expressed a sentiment of not significantly benefiting from the ability to hear and appreciating quiet.
"If you are not accustomed to sounds, they can be annoying, and may make you feel tired. The same can happen with vision, it is just too much, but you can close your eyes, and shut out vision stimuli. You can't do that with hearing. At least if you regain hearing with normal sensitivity, you can be overwhelmed by sounds of your body." ordu described the potential challenge of re-acclimating to sound, comparing it to vision and noting the lack of an equivalent "shutting eyes" mechanism for sound.
"It's awesome that it works for some people, just like CI's work for some people(but not all). Until we can restore hearing(or insert favourite disability here), to everyone, it's going to be controversial inside of those communities, because it makes our already smaller world, smaller. Which causes lots of emotions as you can imagine." zie explained that the success of such therapies for a subset of individuals can lead to controversy within affected communities due to the resulting shrinking of their world.
"Helen Keller said, 'Blindness separates people from things; deafness separates people from people.' Deafness doesn't have to separate people from people, but it does. Until we can eradicate XXX disability completely(unlikely) we should as a society strive to make their worlds bigger, not smaller. Sadly so many people don't feel that way, for various reasons." zie quoted Helen Keller and advocated for societal efforts to expand opportunities for people with disabilities rather than diminish their world's size.

The Future of Genetic Therapies and Gene Editing

The discussion also touches on the broader advancements in genetic therapies and gene editing technologies, including their underlying science, history, safety concerns, and potential for wider application.

"I see alot of advances powered by genetics now days. Is there a specific field in genetics pushing this? I used to hear buzz about CRISPER/CAS9 is it what is underlying most of these advancements? How come alot of gene editing stocks have taken a serious beating if the tech is so good." max_ inquired about the driving forces behind genetic advancements and the market performance of gene editing companies.
"The tech behind this is not new or difficult. The issues are related to safety and regulation. Early efforts in gene therapy had disastrous results and current treatments are not trying to repeat past mistakes." searine provided context on the development of gene therapy, noting past setbacks and the importance of safety and regulation.
"Can you share examples...? Just curious as an outsider looking in." beambot requested examples of past gene therapy failures.
"The most notable obstacle faced in the gene therapy field was that of Gelsinger in 1999, who is understood to have died after his body overreacted to the adenovirus vector." ortusdux provided a historical example of a fatal gene therapy incident.
"This particular study looks like it's dealing with a pretty narrow condition and solution (protein missing - add gene for protein). I don't think this particular research can be extended the way you hope." im3w1l tempered expectations about the immediate applicability of the specific research to broader forms of deafness.
"Ideally, future research will address deafness caused by these and other other factors." jonathanlb expressed hope for future research to encompass a wider range of deafness causes.
"Yes, I would really like to see research targeting Connexin 26, since it's the most common cause of hearing loss, but it seems it's much more difficult to 'cure.'" janeerie highlighted a common cause of hearing loss (Connexin 26) and the challenge in developing a cure for it.
"Regeneron had announced positive results in its gene therapy drug for deafness in Feb 2025: [link]" smath shared news about another company's progress in gene therapy for deafness.
"Please rename this to 'Gene therapy restored hearing in patients with autosomal recessive deafness' so as not to raise and then dash hopes of deaf HN readers." thomassmith65 suggested a more precise title for the article to avoid misleading the audience.
"How challenging is it for a person who has been deaf for let's say 20 years to suddenly regain hearing?" S4H inquired about the difficulties of regaining hearing after a prolonged period of deafness.
"If they were born deaf, or lost hearing as a young child during the language development stage, then it would probably be a long adjustment. Things would just be noise and it would take a lot of training to distinguish sounds, speech, etc." jallmann explained the potential challenges in adapting to regained hearing, especially for those who lost it early in life.
"What if we erase the genetic code that ends up saving us from some alien virus, you know? I'm not saying this is a good argument, just something interesting to think about." guerrilla raised a speculative point about the potential for genetic interventions to inadvertently remove beneficial traits.
"How would one find out if they have this type of hearing loss? I have moderate to severe hearing loss in both ears since birth and there’s never been an attempt that I’m aware of to diagnose the cause beyond a standard inner ear examination." jhaddow asked about the process of diagnosing the specific cause of hearing loss.
"Asking your ear doctor seems like a good idea for this, rather than random people on HN.." apt-apt-apt-apt offered practical advice for obtaining medical information.
"Whole Genome Sequencing is affordable now. I’d suggest a 20x hifi long read from broad clinical labs for $1200 or so. Use opencravet to dig into the results." codytruscott provided information on accessible genetic testing and analysis tools.