Comment by Animats | Hacker News Reader

Comment by Animats | Hacker News Reader

Here's an example of scientific research being questioned for such ethical reasons, in a less familiar area.

A genetic cure for hereditary deafness looks possible. Here's the objection: "Members of the signing Deaf community argue that research which aims to eliminate or cure deafness is a form of cultural genocide. The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community."[1]

A similar argument has been made against cochlear implants, which already work in many people who are totally deaf. "According to the National Association of the Deaf (NAD), “An implant is not a ‘cure’ and an implanted individual is still deaf,” which makes us realize the crux of the issue. Those who are deaf and hard of hearing consider these disabilities to be aspects of their identities. By using the cochlear implant, they are essentially killing a piece of themselves that they’ve lived with from the day they were born."[2]

Think about that for a while.

[1] https://impactethics.ca/2017/03/02/gene-therapy-a-threat-to-...

[2] https://www.theodysseyonline.com/cochlear-implant-controvers...

Can I infer from this comment that you disapprove of the Deaf community's stance on this?

If so, I suggest reaching out to your local Deaf community and spending some time with them. Maybe take an ASL class. You will find that, indeed, there is a unique culture in the Deaf community. You may not end up agreeing that deafness should never be cured, but it will at least give you some context you seem to be missing.

Since you said cochlear implants "already work in many people who are totally deaf" I think you may be missing the most crucial part of one of the quotes you gave: An implant is not a ‘cure’ and an implanted individual is still deaf.

Cochlear implants don't let you hear very well. Most users still rely heavily on lip reading and sign language.

I will give a personal anecdote. I am not deaf, but I have taken ASL classes and engaged with the Deaf community. I met one person who was born totally deaf but got cochlear implants as a child. She cannot converse with hearing people as normal. She is impressively good at lip reading, but still misses a lot of nuance in conversation, and her speaking voice does not sound like a normal person's. So she has been ostracized from social and professional groups. At the same time, she is also ostracized from the Deaf community, because she can't sign as fluently as a child who grew up signing, and the majority of the community is against implants. So she has the worst of both worlds.

So, if I'm correct and your implication is "Obviously deafness should be cured," then I think you may be missing a lot of cultural context and some facts about how the implants work. Perhaps a 100% effective genetic cure would change the discussion somehow, but I'm not sure it changes the cultural implications.

(I'm not that person, but I have opinions on this. I'm also not deaf, but I am autistic, and the autistic community has a lot of parallels to this that I can't help but notice.)

> because she can't sign as fluently as a child who grew up signing, and the majority of the community is against implants

This is two separate issues.

I view the first as like any other language fluency thing: should English-speaking communities ostracize members who are less fluent in English? If they're extremely non-fluent, to the point of not being able to communicate at all, then there is no morality here; it's kind of just an unfortunate thing that happens as a result of non-communication, like if I (a non-Mandarin speaker) showed up to a Mandarin-speaking social group and tried to be their friend. If they just have a thick accent and word things oddly sometimes, doing so might be an asshole move.

The second is entirely the community's problem. People should, at least, have the option of curing (even partially) their own deafness, without facing weird stigma from other people who choose not to do so. It is ridiculous to ostracize other people for doing things that they feel improve their own lives, even if you would not make that same change to yourself.

In our universe where we don't yet have a good way of doing so, what this means is that research into developing better implants is a good thing. Forcing implants on all deaf people would be immoral, as would forcing any other medical thing on people. But just making the option available is not.

I don't know how this translates to children too young to meaningfully consent, and I will stubbornly refuse to form an opinion on that because it depends on factors that I know nothing about. I don't think it matters, because it is immoral to hold back things from consenting adults solely because we haven't decided whether children should have them too.

Reminds me of the book Far From The Tree. The deaf have formed proud communities but have also spawned zealous subcultures that are effectively cults. Some seriously suggest that deaf children should be taken away from unafflicted parents.

There's a science fiction story about that, from before cochlear implants worked. Anyone know the reference?

Probably not what you're thinking about, but book three or four in the Ender's Game series (Orson Scott Card) has a community of very OCD people (women?), which are revered as being holy. During the book it is discovered that the cause is genetic, not from the divine. A cure is developed, which almost all of the community take, but the head priestess refuses to get the cure, insisting on believing that she is divinely touched and remaining enslaved to OCD compulsions.

Reply on news.ycombinator.com