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Comment by ForrestN | Hacker News Reader

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.

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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.

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.

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.

Hip problems are brutal, been there before :( Mine (mostly) resolved when I addressed some other underlying issues but I was also seriously considering joint replacement for a bit!

The surgery and downtime are no joke, but everyone I've talked to who went through with a replacement was glad they did. I even know at least one guy who now works on his feet all day. Not saying to just take the plunge now, but if you ever do, the outcomes seem pretty damn good.

Yes - it’s a bit ironic that I have an extremely rare condition (Perthes disease) that ultimately may be resolved by a very common surgery. And it is known as one of the best as far as outcomes - the Lancet called it the surgery of the century, so I do at least have some hope there.

Good to hear you were able to mostly resolve your issue. Given your name I’m assuming you have ankylosing spondylitis - I certainly see that in joint replacement forums from time to time, often people younger than I at this point who are facing more joint issues than myself.

Damn, I recently learned about Perthes and it does not sound fun. Glad you're managing for now but I hope you get some relief in the future, through surgery or otherwise.

And yep, spondylitis with a side of hip bursitis, so Perthes hits close to home. Eventually I figured out I have colitis, started to treat that, and the arthritis got 90% better. Also I learned that some people with really aggressive colitis who go on steroids for years wind up with osteoporosis so bad that they need... hip replacement surgery, lol. It all comes full circle!

Do you have significant pain?

Pain is the main disability; most days I walk well enough that no one can tell I have issues, but the pain can make it hard to concentrate on my work. That said, some days I have little pain and so it is hard to commit to a surgery when I have a string of good days.

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)

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.

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.

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.

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?

>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.

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?

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"

> 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.

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.

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.

The controversy is due to cutting off perfectly good and functioning body parts. Correcting a body part that is not working correctly isn't all that controversial.

Are you implying that there'd be no controversy if people were able to swap parts of their bodies with others'?

No, he's implying that someone with a non-functioning body part getting a functioning donor (presumably from someone who just died and has no chance of ever needing or wanting theirs again) would not be controversial.

To answer farther into your line of questioning, though, I'd personally consider replacement reproductive systems "fully functional" only if they allow having children with one's own DNA. If we were to reach the level where someone could get a sex change and then perform the reproductive role of their new sex with their own DNA (except maybe the sex chromosome itself)-- and especially if they could then swap back in the other direction later-- I actually do think that would eliminate a lot of the implicit concerns that make it controversial.

The goal of all life is to make more life, is it? Not everyone wants kids. Is it my duty to be able to make kids? But what about my autism and mental illness? I thought that people didn't want people like me making kids. Or is it all about my usefulness to cishet guys? A woman is, after all, just a tool.

Remember, you asked if "there'd be no controversy." I'm just examining the controversy, not universal truth.

I didn't tell you that you need to want or have kids. I do believe your life will have been pointless if you don't, but you're free (and likely) to disagree with that. Personally, I think "eternal life" as promised by some religions can be analogized as reproduction. If you think you've identified another biological purpose of life, that's good for you.

I don't know why you'd bring sexism into this; it takes two, and both sides are just as valuable. Having biological kids with someone means your DNA's going to be stuck together as a new person, so you want it to be someone you care about. It almost sounds like you're transgender yourself, but most transgender people I've spoken with about the topic would be thrilled to be able to have kids, especially MtF folks on the topic of carrying. I've certainly heard some say they don't care about it (and they have to come to peace with that, regardless), but I haven't heard of anyone saying not being able to is part of their identity.

This right here is part of the problem. You identified that I don't agree with you on the current state of things and picked a fight, rather than agreeing on working towards a place we'd both be happier with, anyway. (Or are you saying you specifically don't want transgender people to be able to have kids? Do you think there'd be something wrong with it if they were able to?) This entire line of argument would be irrelevant if science got to that point. But political and medical will is stalled arguing about half-measures instead. I know science is slow, but I just hope there will come a day when people can make decisions about their bodies without loss of reproduction being a concern-- and not talking about it won't get us there faster.

Your questions about autism and mental illness falls under "eugenics," which is kind of one of the major discussion points of this entire thread.

I'm not sure how you came to that conclusion? If you had a functioning body part and could swap with another person that would still be cutting off a functioning body part. Just because you got another functional body part doesn't change anything.

If it becomes possible in the future to just swap body parts with no issues, it would probably be less controversial, but I don't think it would really be accepted. The problem is the current sex change operations are no where close to that. You can't just flip back and forth and have all your parts remain fully functional.

There is, of course an exception and that is with organ donation. That however only happens when the person who is removing the functioning part does not need theirs which can happen because they are dead, there is an extra one (kidney), or it will grow back (liver). This, of course, is not the same type of thing as we are talking about.

Why are my private bits any of your business anyway? Don't reproductive rights go both ways? I can't even have children of my own anyway since I'm married to a woman. But it all comes back to how useful I am to a cishet guy? Either I'm someone's fetish or a baby-making machine.

> Why are my private bits any of your business anyway?

I think, and most people probably agree with me, that cutting off perfectly good body parts is not acceptable regardless if they are your private bits. Bringing up the private bits instead of a generic body part is attempting to make it emotional.

If somebody wants to cut off their healthy foot, people do not find that acceptable. Doctors are supposed to do no harm and cutting off the foot would be doing harm. I think most of us like the idea of doctors being there to heal us, not harm us.

Society believes in restricting what people can do with their body even if no harm comes to others. Maybe you think that is dumb, but most of society disagrees.

Here is an extreme example. We believe drunk driving should be illegal even if nobody is harmed. We don't like that behavior so we ban it. How many people complain about that?

> Don't reproductive rights go both ways?

Of course they don't. Men have no right to abort without the woman's consent. Men also cannot just give up rights to their children if they don't want to pay child support.

What makes you think we as a society want reproductive rights not being universal? Do you want men to be allowed to force the woman they impregnated to get an abortion? If not, then reproductive rights cannot be universal.

Once you start blocking reproductive rights one way you will have a difficult time stopping it in another area. Either men have to be able to give up rights to their children or society should be allowed to restrict other rights.

It sounds like you also have some sort of notion that you have a right to have a kid or something like that. I am dubious of such an argument. Could you explain why you think you have such a right?

> But it all comes back to how useful I am to a cishet guy? Either I'm someone's fetish or a baby-making machine.

Nobody said anything close to that. Please do not read into my statement anything more than the exact words.

Where are young children getting surgery?

In the US there are plenty of places where children can get surgeries. This is a small sampling of the locations:

The Stanford Children's Hospital [1] will provide surgeries to both minors and adults. It doesn't specify how young the children can be.

The University of Illinois [2] will do surgery on people under 18, but doesn't specify how young the children can be.

The University of Rochester [3] will do some surgeries for people under 18. It doesn't specify the age, but it is under the "Adolescent Medicine" section.

Seattle Children's Hospital [4] will provide referrals for gender-affirming surgery to children as young as 9 so long as they have started puberty.

[1] https://www.stanfordchildrens.org/en/services/gender/what-to...

[2] https://hospital.uillinois.edu/primary-and-specialty-care/su...

[3] https://www.urmc.rochester.edu/childrens-hospital/adolescent...

[4] https://www.seattlechildrens.org/clinics/gender-clinic/

Looking at the links, none of them suggest that surgeries are performed on children. Puberty blockers aren't surgery. Intersex children are surgically mutilated without their consent but adult trans people need an OK from two psychiatrists. If I had had puberty blockers (reversible) as a child, I wouldn't have had to go through something painful. I was only able to start hormones at the age of 23 when all the changes had already happened. Hormones aren't able to reverse everything. Then people complain that we don't look good enough when we were never given the chance (unless you're rich enough to be able to afford surgeries, which I'm not).

Please reread.

Here it is explicitly from the Rochester one

>Surgical Services – Referrals and coordination of care (as medically necessary)

>Orchiectomy – Urology (adults only)

>Gender-affirming Top Surgery – Plastic Surgery or Breast Surgery

Are you suggesting a top SURGERY is not a surgery? Why would they say adults only for the orchirctomy but not for the top surgery?

Second, puberty blockers are not always reversible. Please do not spread medical misinformation.

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

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.

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.

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