[ForrestN]

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversity of human experience is too much?

Obviously, there are easy cases: this kind of technique to prevent conditions leading to abject suffering, for example. But, knowing and admiring deaf people makes me unsure about the idea of "curing" deafness, for example, as a goal of medicine.

[dotnet00]

At the same level, it's worth considering the effect on society. Western society (and increasingly global society) has grown a lot more accommodating for certain disabilities because it is understood that the condition was not the person's choice and cannot be fixed. But if the condition is capable of being cured/managed with no serious side effects, and the cures are easily accessible, what is the right amount of effort society should put into being accommodating?

These are all difficult questions, but it feels like we're going to eventually have to put aside our well founded fears over eugenics and confront these serious questions properly. For instance, many places offer the option to test fetuses/parents for markers of serious genetic disease and offer the option to terminate the pregnancy with the argument that the child would either not be viable or would have a horrible quality of life. On one hand this sounds reasonable, on the other hand it's pretty much a level of eugenics.

[spondylosaurus]

Also disabled, and this is a topic I've been chewing on a lot lately—I started writing up a longer comment but deleted it, lol. What I really want to say is that I have a few problems I would 100% cure in a heartbeat, and a few that I'm less sure about, so I get it.

Some disabilities only have one true cure: fix the part of your body that's bad at its job. No amount of accomodation or acceptance is going to mitigate the worst parts of, say, liver disease. But other disabilities have two paths forward: cure the body, or create a world that's more accommodating to people with that disability. Deafness seems like it falls in that category, which is tricky, because both paths have salient points but are also at odds with each other.

[silverquiet]

I'm actually in this position a bit. I'm still young(ish) with a serious hip condition that causes me some disability. There are options for replacement that could get me to near full function, but there are drawbacks and the shear fear of surgery and replacing part of my body with metal and plastic. If I was wheelchair-bound, I don't think it would be a hard choice, but I am able to essentially do most of the things I need to do at least as I am. And so I put it off and put it off.

[ImJamal]

I think there is an easy line. We know what should occur with certain parts of the body. Ears should be able to hear so when they don't we know there is a problem.

There isn't a height in order to function properly or something like that. If somebody is 5 feet or 6 feet they are still capable of having their whole body function. Yes, they may have issues due to their height but their body still works correctly. (Extreme heights, both tall and short, may cause issues and there could be conversations around that, but within the normal range there isn't any sort of function of the body that doesn't work)

[vsuperpower2020]

It's crazy to me that we even need to explain the difference between variation in height and a non-functional organ. I don't know if people are just so open minded that their brains fell out, or if it's some new idea where everyone gets their own personal perception of reality and nothing is real, maaan.

[santoshalper]

Here's the problem with slippery slope arguments. You could substitute all medicine and your point would still stand. Do people with a limp need to be "fixed" or does it add character? You know who is the right person to decide that? The person receiving the therapy, or if they are a minor, their parents. Nobody else is well equipped to make the decision for them.

I suppose I could be wrong, and this could be the start of Gattica, but I highly doubt it. I think far more likely is that over the next few decades, millions of people will be able to hear who otherwise would not have.

[legohead]

Designer babies are fine with me. If I could make a handsome, strong as an ape, genius, healthy baby, I'd do it! I'd do the same for me.

If there's a moral sticking point, for me it would be about the cost and privilege it assumes. We still have a very long ways to go before that is figured out...but if we have genius level babies, maybe they can do it for us.

[jasonfarnon]

I imagine if people selected for what society wants at a given time you'd have disasterous population level effects. Aren't animals bred to taste pretty messed up in a million other ways?

[Loocid]

>Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'?

There may be benefits of being 6' over 5' but I dont think that's comparable to deafness.

6' vs 5' is the difference between great hearing and good hearing.

The deafness we are talking about is the difference between having legs and not having legs.

[eklavya]

Am I reading it wrong or are you admiring deafness which shouldn't be cured? Or the deaf people who are admirable?

Why should curing deafness not be a goal of medicine?

[sertgert]

I'm reading it like the hedonist's treadmill. Why be happy with a 6 figure salary when there's people with 7 figure salaries? Are you content with your current situation, or are you missing a part of what it means to be human by not having better eyesight, better teeth, better hearing?

I think what OP was referring to was how rich the lives of the deaf can be, and how discouraging it might be to hear "y'know, you're not /really/ experiencing life until you can hear"

[foxyv]

> Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics?

The difference is usually a matter of informed consent. Eugenics tends to be non-consensual. Sterilization or forced birth control for unwanted individuals. Murder of unwanted individuals. Involuntary genetic modification of unwanted individuals will probably pop up eventually.

Typically gene therapies are on living, consenting people with all the information to make a choice. It also doesn't usually result in germline modification. The sticky part is when you get to babies and fetuses. Can a mother consent for her fetus? What about germline modification? In-vitro gene therapy? Then you are getting into Brave New World territory.

[virissimo]

Perhaps we should have different words for voluntary (choosing to regain your hearing, etc...) and coercive (forced sterilization, etc...) "eugenics", since almost all of the negative connotations of the word are (rightly, IMO) attributed only to the latter.

[ImJamal]

Parents are going to choose these things for their kids though?

[commandlinefan]

That was my first though, BUT... to play devil's advocate, people choose gender reassignment surgery (including young children) and that choice continues to be very very controversial.

[skybrian]

Here is a framework for thinking about it: raising population-level concerns and using them to justify laws restricting what children parents can have (or not have) seems like the pro-eugenics side. The reproductive freedom side is to take a laissez-faire attitude on how the human population changes. Let parents choose the children they want to have and it will probably work out.

That doesn't make the issues easy. There are some forms of state coercion that people are sympathetic to. For example, in India, there is unfortunately a strong preference for male children, and there are laws to prevent sex selection. This is obviously reducing people's reproductive freedom because there's a state interest in a balanced sex ratio.

Another example of state coercion that people are unsympathetic to is China, where the state had an interest in reducing population growth and imposed a one-child policy. Seems like that's eugenics? It's imposing personal hardship for a population-level concern.

Along these lines, I'm wary of population-level concerns like "will deaf people die out." What could the state do about it? At the individual parent level, nobody should have to raise a deaf child if they don't want to, when it's unnecessary.

But a tough case for the reproductive freedom side is: can deaf parents use prenatal testing to select for deaf children, if that's what they want? That's not a population-level concern, it's personal: specific parents want a deaf child. A lot of people have trouble with that kind of reproductive freedom when they wouldn't have an issue with wanting a boy or girl, because deliberately causing deafness sure seems bad for that child.

[dandanua]

In the current state of the world ethics is faked. Survival is everything. AI will be used for weapons and for power grab by politicians and billionaires (e.g. through mass manipulation). Gene "fixing" will be used by those who can afford it, 100%. Today everyone wants to be better, stronger and smarter. Otherwise you and your offspring (if any) are doomed to stay in lower castes of society for ages. Be sure the top castes will arrange that.