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A new treatment promises to make little people taller (statnews.com)
55 points by hhs on Nov 25, 2019 | hide | past | favorite | 74 comments



As far as ethically questionable drugs go, particularly around genetic abnormalities, this one seems like it is about as uncontroversial as it can get.

It doesn’t confer benefits to someone who doesn’t have the specific genetic issue. It works around the missing protein rather than trying to alter the broken gene. And there are significant co-morbidities that come along with dwarfism that make it more obviously a medical issue rather than just being about physical stature.

It doesn’t change the underlying gene, so the issue can still be passed on to offspring. So nothing is being eradicated or erased. If it works as described it should be a highly effective treatment with minimal side effects which avoid a host of medical issues for the children that get it, besides giving them a good shot at > 1st percentile height.

I can imagine much more ethically dubious treatments that will certainly be coming down the line as we continue to identify, target, and find ways to enhance these genetic pathways.


>Is it ethical to make a little person taller?

No [there is no ethical problem], why would something which has no negative effect on anyone else present an ethical challenge? It doesn’t say make everyone into a 6’7” basketball athlete, it says make small people taller which translates into a more normal height range.

If everyone potentially affected by dwarfism in the future were diverted into normal growth via treatment, in a few generations there would be no one left who is affected by it physically.


Maybe its similar to what happens sometimes with young deaf children whose parents are deaf? The parents sometimes refuse to get cochlear implants for the child that would give the child normal or near normal hearing, on the grounds that they want the child to grow up fully in "deaf culture".

Many who have been deaf all their lives, as opposed to those who lost their hearing as adults, view deafness as just a difference, not as a disability to be cured or fixed, apparently similar to the way most see race and ethnicity. Telling them they need to "fix" their child's hearing apparently to them is like, say, telling a Jewish family they need to raise their kids Christian.

Achondroplasia has a hereditary component, so there will be families where both parents have it and their child has it, and they have many relatives with it. I would not be surprised if some of them feel that there is an achondroplasia culture, and it is wrong to "fix" a child to make them fit non-achondroplasia culture.


I think you’re reasoning is sound, I’m also dismayed to think of people who would deprive their child of SOUND.

That should be a jail-able offense, assuming they are making a decision that can’t be undone.


Seems like you could make the same argument for foot binding.


There are tons of nasty side effects that go with dwarfism; it's not as though it's _just_ being short. It can cause bowleggedness, hunchback, limited mobility of elbows, and all sorts of other issues [0] (yes, those refer to the specific kind of dwarfism this medicine treats). A parent can't subject his kid to those just so he can feel like his kid fits a "culture". It's wrong for the same reason mutilating girls' genitals to fit a "culture" is wrong. It is unethical to cause a child a lifetime of problems for personal gratification or because of a parent's insecurities. At least cochlear implants can be given at a later age; this is a developmental thing which a child cannot choose for himself at a later age.

[0] https://www.mayoclinic.org/diseases-conditions/dwarfism/symp...


When referencing baby genital mutilation, it might be worth dropping the "female". It's just as horrible to slice up a male baby's genitalia, and it's done much more often.


I wonder how much more prevalent phimosis would be if infant circumcision weren’t a thing, though. Speaking from experience here, lol, adult circumcision was not fun.


Not very. Few countries practice widespread circumcision.


All genital mutilation is wrong.


The ethical issue lies in classifying different kinds of people as undesirable and then fixing them with drugs.

Sometimes "fixing" a specific condition sounds obviously ethical to some and to others it is offensive.


> If everyone affected by dwarfism in the future were diverted into normal growth via treatment, in a few generations there would be no one left who is affected by it physically.

Why would it? Unless the changes are made at the genetic level nothing change. Well, some things will change.


If dwarfism becomes something that's routinely treated in childhood, like a cleft palate, then there will still be people who have it, but no one with access to basic health care will be affected by it.


I believe the opposite is true. It would promote more of the genes in society, because dwarfism is sexually selected against. Thus more children would be born with dwarfism.


There are many afflictions which are hereditary. We typically don’t go about saying how finding treatments that allow these people to live at all or live improved lives inflicts the possibility of further establishing the affliction in a population into the future. I mean this comes off as kind of close to a eugenic attitude, although not quite there.

I’d be okay with some sort of disclosure for future partners as we’d be for many things of this nature.


I think enforcing any sort of eugenic policies would also be unethical including the forced disclosure of the medical procedures we are discussing.

It's hard for me to believe something is wrong and shouldn't be done while simultaneously believing it should not be prevented with policy.

We need to evolve the ability to uncover deception with our minds and prevent betrayal innately. Those who can do that possess gifts that will reward the successful species in the very long term.

As it is, we are unable to detect and prevent it as a society and we need that skill. I admire it in those I know who have it. I wish I was better at it.


You do get people complaining, with no apparent irony, about how modern medicine weakens the human race by allowing unfit people to reproduce, often with an extremely broad definition of "unfit". Idiocracy will be invariably be mentioned.

And then they get offended when you say that's eugenics.


So few people seem to understand this. People tend to think I'm insane when I suggest that abortion of down-syndrome foetuses will eventually lead to more down-syndrome foetuses.


That is different because down syndrome is not hereditary. It's caused when chromosomes don't properly separate due their tangling caused by aging of egg cells.

Plus, if it were a hereditary genetic condition, abortion would eliminate those genes from the population reducing the occurrence over time.


Would you agree that there are probably some genes, especially on the mothers side which would increase the likelihood of the foetus having down-syndrome?

Or some genes on the mothers side which will increase likelihood of engaging in behaviour that increase the chances of the foetus having down-syndrome? (Smoking etc...)

Because if so, then a huge evolutionary pressure has been lifted from having a down-syndrome child. In the past having such a child would incur immense cost. There are of course difficulties birthing and sustaining an evolutionary dead-end which would reduce the birth-rate of down-syndrome having couples right?

Therefore, genes which increase the likelihood of having down-syndrome will proliferate much more in world which aborts down-syndrome foetuses right?


It's being tested on children who can't really consent- for obvious, practical reasons. The people who are really deciding this are the children's parents.


As long as it’s an approved procedure with minimal side effects where the benefits far outweigh the downsides, I don’t see that as a problem any more than parents who get other non life saving treatments for their kids which will be beneficial in the future.


I think you're probably right, and that it doesn't make much sense to not give your child a drug that would fix their bone growth even if it isn't literally life-saving.

As long as the side effects are well studied and strictly less bad than the alternative. If the side effects were awful then it would be much trickier, but it seems like that's not the case.


Skin color effects your future.

Should parents change their child's skin colour.

If you think that has ethical issues, then so does height.

Cosmetics can change your life path

Crooked teeth we accept as ethical to change in children.

Breast size we don't.

I think ethics is involved, even if it's wrong.


As I recall, being significantly out of range in terms of height also has fairly broad health implications due to maldevelopment of internal structure.

So, it's not just height that gets fixed.


[flagged]


I think parent agrees with you—I think he's saying that the treatment would have no effects on anyone other than the person receiving it, so it doesn't present an ethical challenge.


Probably a cultural difference led to starting the statement with No rather than Yes.


Height is a predictor of evolutionary viability in humans. Altering the physical manifestation of any genotype, does affect both one's mate and potential offspring. Therefore it is deception and thus, imo, unethical.

I believe this is true of all medical procedures that counteract genetically maladaptive traits.


Correct. This is why, for example, we all agree that it is unethical to get laser eye surgery, because that would be deceiving potential mates about the genetic viability of poor vision.


As mc32 argues in a sibling comment of yours, hiding that laser surgery could be considered unethical. Situation changes when you disclose it.


Best to refrain from flippant sarcasm when dealing with such sensitive matters, especially online.


Fine, require disclosure of some sort in the event of possible procreation.


That's only a partial solution, rational thought has little to do with sexual selection. I don't think we can come up with anything better though.


My partner and I got dna tests before beginning on the path of procreation. We were making a decision that affected a human being that would have no input on its coming into existence. We owe it to a child we would come to respect and love to be very conscious in every aspect of its life including its genetic viability.

Less than rational thought in such a matter, I believe is very selfish and unkind to a life that I may create.

I understand this isn't the normal way of thinking on the issue, but I wish it was more common.


The premise that backs this approach seems to be that there is a black and white “genetic standard” but the reality is surely very subtle shades of grey. What are the parameters for deciding between genetically viable and genetically unviable?


It's not a genetic standard, it's a phenotypic advantage. Taller humans are preferred by other humans and have a physical advantage over the competition so they are more likely to survive as the fittest.


The idea that dwarfism isn't a disadvantage is the kind absurdity now promoted by mainstream culture in the name of sensitivity.


That was my take on it as well. My view is the opposite: if you have a child with dwarfism, it's unethical to refuse to treat them, if there's a safe treatment where the long term effects are understood (I get that this drug is not yet that, but hopefully someday could be).

Being short is a disadvantage in our society, no matter how you try to slice it. Even people without dwarfism tend to be looked on less favorably if they're shorter than average. It sucks, but pretending that being short isn't a disadvantage is just willful disillusionment.

And that's before we get into any of the health problems that dwarfism can cause. I look at this similarly to how I see vaccinations: I'd consider a parent unfit to raise a child if they'd refuse to treat their kid's dwarfism, if a treatment is possible and reasonably safe.

Pride in a disadvantage is helpful for people psychologically, in order to cope with the oppression or cruelty of others, but allowing it to turn into a desire to keep that disadvantage -- and deny others the ability to choose for themselves whether or not they want treatment -- is truly a bad thing.


>>Pride in a disadvantage is helpful for people psychologically, in order to cope with the oppression or cruelty of others, but allowing it to turn into a desire to keep that disadvantage -- and deny others the ability to choose for themselves whether or not they want treatment -- is truly a bad thing.

Exactly, the desire to boost the self-esteem and social acceptance of those with disorders is now having pathological consequences.


This is a stupid argument.

If it was a mandatory treatment that would be a problem. If people want to be taller, go for it.

Like saying : "Oh we cant research cures/preventative procedures for downsyndrome because that might offend some people". Nonsense


My view on this, if I knew my kids were going to be little: 1) I would absolutely get my children on that. 2) I don't want others to take it - I don't want to give my kid to have a chance to mate with someone else after the treatment. Chances of producing affected offspring are too high.

I'm a bit too tired right now to see a solution which isn't straight up eugenics, but it's an interesting problem to ponder about. Public record? Forced sterilization? Abortion? Of whom, carriers and affected or affected only?


If the medicine is easily available, then you shouldn't have any issues with your kids mating with people afflicted. Your grandkids can just take the medicine and it will become a non-issue in the same way that a cleft lip is today.


That's the issue I'm worried about - after a doomsday scenario like war / cataclysm / plague my descendants would most likely be deprived of that medicine, likely resulting in my direct ancestral line dying off.

In a more general sense, I'm very concerned about the point in human evolution when we can't live our lives and reproduce anymore without the aid of technology. Then it takes one cataclysm to wipe us out.

I see your point though, this kind of event seems unlikely.


After a cataclysm, wouldn't your short sighted descendents have trouble without glasses too? Does that mean you wouldn't date anyone who's shortsighted?

Also you're assuming we develop technology to cure all these genetic problems in the phenotype, without being able to CRISPR them away in the genotype too, which may happen in the nearish future.


This is a really interesting point I haven't thought of, but haven't we really already reached that point? Terrible diseases that used to wipe out entire civilizations are stopped dead (heh) in their tracks by taking a pill for a few weeks, stopping us from developing an immune system that can respond well.


> I'm a bit too tired right now to see a solution which isn't straight up eugenics, but it's an interesting problem to ponder about. Public record? Forced sterilization? Abortion? Of whom, carriers and affected or affected only?

Everything on that list is eugenics.


If someone is born with dwarfism and wants to be a dwarf (sorry if this is not the PC term), they can be a dwarf. If someone is born a dwarf and wants to be a normal height, they can be a normal height. Are there really dwarf organizations arguing that no dwarf people should even be allowed to be a normal height? Or is this just manufactured outrage for a news article?


I'm not really surprised. There are deaf parents who have deaf children and then refuse to allow their children to be fitted with cochlear implants, all in the name of something akin to "deaf pride", and a delusional denial that being deaf is any kind of disadvantage. It's understandable to build that sort of thing into one's identity to the point where it's a blind spot, but it's unfortunate that the kids end up suffering for it.

Part of the issue here is that -- presumably -- the drug must be administered during childhood, as it's too late to make a difference during adulthood. So the child isn't the one making the choice, legally: it's the parents.

Personally, I find the question asked of the article to be upside down; I think it's unethical for a parent to deny a child a treatment that would improve their quality of life, simply because they are "proud" of their in-group. It's almost as bad as the anti-vaxxers.


Why are people taking offence to this? If you find the treatment distasteful then don't use it. If no one uses it then it will disappear on its own. Problem fixed.


Because, before you can cure something, you have to admit that the condition was a kind of flaw in the first place. Maybe it's easy for most of us to say that dwarfism clearly is a flaw but, if you were a dwarf, you may see it differently.

There was a similar outcry some years ago when there was talk of a cure for some kind of deafness. And, it's a little different, but kind of similar to Iceland's near elimination of Down Syndrome.


Calling it a "flaw" is probably going too far. It is a simple acknowledgement that if your physical traits or abilities diverge significantly from what is average, then your quality of life will suffer in some way.

Depending on your condition, maybe you won't suffer much of a loss, or maybe you will suffer significantly. The simple reality is that society is not ever going to fully accommodate someone that is 4'6" (137cm).

As a somewhat irrelevant example, I'm colorblind, and I don't see any redeeming value in that trait. It's a mild inconvenience, and it there were a treatment to make it go away without significant side effects, that would be nice. There is no reason to be "proud" of your physical attributes that you had no part in creating. If you are part of a historically marginalized group, then pride in your group can emerge as a method of coping with that oppression, but otherwise there is no point.


Being short is not a flaw but dwarfism is not the same as simply being shorter than average. It is objectively a flaw because it can directly lead to various other health problems.

Van Gogh was colorblind. Had his parents been able to cure him of it at a young age, we would likely not have any of his works now. I'm not trying to make any argument by saying this. I don't know what it means.


Perhaps he would've been a better artist without being color blind.

Either way, a person's life and health should be up to them, or, if they're a child, to their parents with their involvement. We shouldn't be condemning people to preventable medical defects just because it might produce benefits in some impossible to imagine way.


> Had his parents been able to cure him of [colorblindness] at a young age, we would likely not have any of his works now.

That's not at all a logically consistent argument. His art might have been better without the colorblindness. Or it might have just merely been different, but equally well-celebrated.

Regardless, you can't make decisions based on extremely unknowable hypothetical futures. If Van Gogh hadn't created any art at all, the world would still turn, and no one would know the difference. It's natural to imagine a world without Van Gogh's art with sadness when you already have his art; but had it never existed, no one would be around to care.


> Van Gogh was colorblind.

This seems to be speculation from a Japanese researcher who wrote a colour-blindness simulating app.


> There is no reason to be "proud" of your physical attributes that you had no part in creating.

Yeah, it seems to do more harm than good to turn a disability into an identity. I totally get that nobody wants to feel "broken" and it probably makes some people feel better to say there's nothing at all wrong with them, but it becomes an issue when it leads to attacks against people who want to help others overcome their limitations or people who want their own limitations overcome.

If I could give my children even small relatively insignificant advantages, or help them avoid some of the struggles I've had to overcome I'd want to.


I feel sorry for the children of such people.

I grew up in an environment of alcoholics. Many of my family were alcoholics.

My sister and I are most definitively not alcoholics. We purposefully avoided such a path. My cousins also.

We are seen by some of the older family as 'prissy/non-enjoyers of life/less willing to be 'alive/etc'. Though overall my parents I'm sure are happy we don't drink like they do/did.

Whenever you break from the group, it causes tension. One would hope most adults weren't so small minded that they would prefer their children suffer like them, so long as to not highlight their own ghosts. One generation should want the best for the next, and that means leaving behind things that have overwhelming negatives (such as genital mutilation) - I'm sure one day we will look back at purposefully keeping a child def or 'little' as a form of extreme cruelty.


It’s also not just about height. Sounds like there are other heath factors to be considered.

> The goal, according to the company, is to prevent the medical complications associated with achondroplasia, which include sleep apnea, hearing loss, and spinal problems.


Perhaps the implications there is something wrong with people that are short.


Also, it must be administered to children. It's not a cure for adults. So the implication is that parents find something wrong with their own dwarf children. Someone once said "All dwarfs are bastards in their father's eyes." which is surely not true but still, you can imagine how this could be a sensitive topic. It seems to be much clearer if you only look at it as a treatment that prevents a whole bunch of other problems that are likely to occur later in life but, you know, humans don't always look at things in the most sensible ways.


That's not how something relative like height works. If you don't use it and everyone else does then now you're the short person.


This (article) is ridiculous.

That was not the first “R” adjective I wanted to use to describe it.

People will find anything to get all PC and fussy about.

You can’t make a blanket statement like “little people don’t want to be taller, they celebrate their dwarfism” or whatever argument he’s making. Certainly there are plenty of people affected by it who wish they could have had a treatment like this.

Hell, I’m 5’10” and I’d have gladly taken HGH or something when I was younger if I knew it was a chance to grow a few extra inches.

Like the song goes... I wish I was little bit taller, I wish I was a baller, I wish I had a girl who looked good I would call her, I wish I had a rabbit in a hat with a bat... lol


3, 2, 1 for celebrities accessing this treatments through Hollywood doctors, and then the spawning of a thriving cottage industry of shady tree doctors to satisfy the demand from their social media followers.


I wonder how long until rich parents are giving this to their kids who will "only" be 5'10" so they can be 6'2"?


Is there any implication in TFA that this would work? It appears to work on a pathway which converts collagen to bone, if that is already happening, would adding this drug make it happen more? is there any "more" to happen?


I am possibly wrong, but from what I've read, this medicine allows the body to produce its own natural supply of the protein in question (which would otherwise be defective). It shouldn't increase the quantity produced, just allow what is produced to work.


I'm not sure this particular treatment would actually do anything, since it acts against a genetic mutation causing dwarfism, but I'm not a doctor. Anyways rich parents are already doing things like this, and we haven't even hit the inflection point with CRISPR on the horizon. Assuming my hypothetical son wanted it, I would try to provide it. Humans are biased and tall men command unearned respect simply because of stature. It's not fair but it's also irrefutable.


You shouldn't be downvoted - there was a recent episode of This American Life talking about this trend. Pediatric Endocrinologists are prescribing growth hormone to otherwise healthy kids who are on the short side of the height spectrum. This is typically at the rich parents demand. The treatment is often not covered under insurance and can cost hundreds of thousands over a few years.

So yes, rich parents are already juicing their kids up on HGH to give them an extra inch or two of height. It's not the same exact treatment as the OP but it is happening today.

https://www.thisamericanlife.org/687/small-things-considered


I read that it results in an extra inch or two in other places as well.


It's much harder to verify that a drug doesn't have side effects than that it has less side effects than an illness.

The problem with giving it to healthy children is that it could make their lives worse even though they get taller (otherwise I see no problem with taking it).


They could go for the bone-stretching alternative discussed in TFA


pretty soon apparently. but why rich only?


The assumption is that it'd be an expensive treatment, and insurance would be unlikely to cover it if there isn't a medical need.


I hope soon, that's so cool!




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