The Deaf Protest Stem Cells to Treat Post Birth Deafness

[Simon_Jester]

Ghetto Edit:

Deaf people can be incredibly noisy

Damn true. It's probably one of the most surprising myths that hearing people have about deaf people.

Myself, I can't imagine why anyone would believe such a thing. But then, I've read that Doc Smith passage.

On a somewhat related tangent, here is a somewhat related thread from elsewhere on using gene therapy to correct colorblindness. Note that the colorblind people, even those with a condition severe enough to cause them some actual limitations and difficulties, seem less than enthused. The people most enthused about gene therapy often seem to be those who aren't the ones who would receive the treatment.

Many disabilities can be compensated for to the degree they become more annoyances than real hindrances. Do you think Oscar Pistorius would prefer a new pair of his prosthetic legs, or an experimental treatment to attempt to re-grow his feet biologically? Are you going to tell a world competitor runner that his life is tragically stunted because he can't run his non-existent toes through sand on the beach?

I understand, but we run into a problem- for every person who copes extremely well and performs better with the disadvantage than most people ever could without it, there are people who are permanently harmed by it, and who would very much like to have the choice of making the disadvantage go away.

There's a sad reality that most people who lose their legs are never going to run like Oscar Pistorius, some of them would surely volunteer for an experimental treatment to regrow their feet, and many of them would be happy if such a treatment were developed. Even if people are quite capable of moving on and enjoying life without getting their legs back, that doesn't mean they should be required to try.

[S.L.Acker]

Broomstick, AD, I'm not going to go over this point by point right with you right now. As I said in a post to Simon I was getting more upset out this than was reasonable and it wasn't doing anything good for anybody. I think that Simon is doing a far better job of expressing the concerns I had than I was.

Once again, sorry for coming off as a tool.

[Terralthra]

No. It is not. Being a Sub is not something someone puts on the list of Top 5 Things that Describe You. Most people will list their Sex, Nationality, Religion and a few other things first. Axes of primary self identification. Gay is on the list. Deaf is on the List. Kink is not. That said, the activism groups are a bit different. Most people who are politically active do it part time. The full timers however, are the ones who write the insane press releases, and in the case of the gay community, made sure we lost the prop 8 fight in CA. They are also the envirohippies who believe in Giaia and all that...

I'd dispute that. For many kinky people, it is right up there with gender in terms of how integral it is to their identity.

Consider the numbers. There are 500k deaf people in the US.

More like 2.5 million. 500k are deaf and Deaf (generally prelingual deafness, ASL as primary or sole language).

By trying to enforce the status quo and stop deaf infants from being given the ability to hear, deaf-culture advocates are trying to do exactly this- to make choice impossible because they fear what these people will choose for themselves.

See above regarding the issues with choice, particularly in infants. Were this not a study using infants, and all that entails, I think you would see a lot less opposition.

There isn't even that much opposition to this. There's a petition...and? How many people signed it? How many people support it?

[Broomstick]

On a somewhat related tangent, here is a somewhat related thread from elsewhere on using gene therapy to correct colorblindness. Note that the colorblind people, even those with a condition severe enough to cause them some actual limitations and difficulties, seem less than enthused. The people most enthused about gene therapy often seem to be those who aren't the ones who would receive the treatment.

Many disabilities can be compensated for to the degree they become more annoyances than real hindrances. Do you think Oscar Pistorius would prefer a new pair of his prosthetic legs, or an experimental treatment to attempt to re-grow his feet biologically? Are you going to tell a world competitor runner that his life is tragically stunted because he can't run his non-existent toes through sand on the beach?

I understand, but we run into a problem- for every person who copes extremely well and performs better with the disadvantage than most people ever could without it, there are people who are permanently harmed by it, and who would very much like to have the choice of making the disadvantage go away.

There's a sad reality that most people who lose their legs are never going to run like Oscar Pistorius, some of them would surely volunteer for an experimental treatment to regrow their feet, and many of them would be happy if such a treatment were developed. Even if people are quite capable of moving on and enjoying life without getting their legs back, that doesn't mean they should be required to try.

Absolutely true - and that's why there need to be choices.

One of the reasons Oscar Pistorius runs so well on artificial feet is because he lost his feet so young and his brain adapted, learning to balance on essentially fancy stilts. People who lose their legs later in life do not adjust as well as children do. Children, and their brains, adapt faster and better than adults (although even old adults still retain capacity to adapt - I know a woman who lost part of her leg in her late 90's in a car accident and doctors considered not even trying to get her up on a prosthesis due to her age. She insisted, however, and instead of a wheelchair she uses an artificial leg at least part of the time.) I absolutely would not stand in the way of anyone who wishes to attempt to regrow their feet - but at the same I can't advocate subjecting infants to such a process until it is VERY well tested with a long track record, nor would I advocate making it the only choice.

Again, a major problem here is that for pre-lingually deaf children there is such a small window in which to do something meaningful. Certain other medical procedures performed in infants, such as open heart surgery, are also potential ethical minefields but where the alternative is death it makes more sense to run a risk. Deafness isn't death, not even close.

Perhaps a better thing to compare it to is pre-natal surgery for spinal cord defects (SCD). That carries hugely significant risks for both mother and child. The ultimate benefit would be a child with a normal spine and nervous system as opposed to a child in a wheelchair and/or brain damaged due to hydrocephalus. Side effects can include not only surgical risks but also extremely premature birth and even death. Even there, not every child with a SCD has brain damage, or is in a wheelchair (my spouse, for example, is above average intelligence and able to walk about unassisted). Attempts did, eventually, get the OK. Unfortunately, the benefits were not as great as hoped. Although it does seem to markedly reduce the incidence and/or damage from hydrocephalus, it didn't seem to do squat for lower-body paralysis and nerve damage. Oh, wow, what do we do with that - we have an operation that can't cure but can mitigate the most severe outcomes of a bad situation, but death is a significant risk and other side effects include all the bad stuff from prematurity, like cerebral palsy and blindness and so forth. Geez, do you go ahead and stave off potential hydrocephalus but then have a child that still can't walk but also maybe has cerebral palsy and blindness, or do you do nothing until birth (surgery for SCD is now routine just after birth) so the kid has a good chance of normal muscle control and vision but will be at high risk for being in a wheelchair, may have brain fluid issues that could be lethal if untreated, and will almost certainly have chronic pain issues and incontinence for life? Holy crap, am I ever happy I don't have to make decisions like that!

So, let's concentrate on the medical. You have a pre-lingually deaf kid, say around 10 months of age. Do you:

1) Do nothing medical but pour your efforts into Sign, vocational training as needed, and start saving for the tuition for a top-notch private school for the deaf. Up sides include no medical risk, downsides include the fact that your child will almost certainly never really fit into the hearing world and may grow up to be fluent only in a language you are not, in a culture you don't feel part of.

2) Get the kid a CI and learn to deal with having a cyborg in the family (including preventing siblings from doing Evil Child things like flushing the detachable unit down the toilet - yes, that has happened), committing to whatever additional resources will be needed on top of that. Up sides include better ability to function in the mainstream if everything goes well, downsides include all the usual risks of major surgery AND an increased vulnerability to brain infections. That's the best case, if the damn thing doesn't work you've just got the negatives, on top of having subjected your child to a surgery that didn't work, AND you're back to choice #1. Another downside to CI's is that they completely destroy any residual natural hearing. Profoundly deaf people might still have some tiny bit of hearing, enough to hear extremely loud sounds, for example, the very sort that can serve as warning signals and thus, from a safety/survival standpoint, still useful, but if they opt for a CI even that would be completely gone. If the CI doesn't work it leaves them more deaf than when they started (this is why CI's are implanted on the side with the worst hearing, and one at a time - so if they don't work the person might still be left with some small shred of hearing).

3) Try this new, experimental stem cell therapy where the risks are undefined but may or may not include brain tumors, which may or may not be lethal, and it might not even work. Upsides: IF it works the child might have more natural hearing, possibly within the range called "normal". Downsides: on the better side of all this, if it doesn't work you might be able to go for #2 or #1, but you've still subjected your kid to medical experimentation which might have unforeseen consequences years later. More middle of the road, it sort of works, but not really, but the kid has some nasty complication. Sorry, kid, about that recurring lump growing out of your skull we have to get shaved back every few years but we thought it might help you more than that CI you wound up getting anyway. Or it might kill your kid - and make no mistake, there HAVE been deaths in stem cell trials.

Now, from the viewpoint of the PATIENT's best interests, which of those three makes the most sense? #1 is more secure - they'll be in a minority, but they will be able to communicate and be part of a community and live a good life. #2 gives them a chance to be more normal (in the statistical sense) but carries some risk, although #1 is a fallback option. #3 - we don't even know if it works or not, or what, exactly, the risks are. If #1 and #2 both work fairly reliably at this point does it make sense to subject children too young to consent to #3? For a problem that isn't life threatening, remember that.

I think it comes down to how much you fear being deaf.

The notion used to scare the hell out of me, to be honest, but I've met enough deaf people that I now know that being deaf isn't horrific. I don't want to be deaf, but I'm pretty sure I could adapt if I had to and it's nothing I'd kill myself over. I don't think I could hand my kid over for stem cell experiments to prevent deafness. I, personally, just don't think the risk is worth it. CI? I don't know, I'd first want some assurance that the kid's condition is treatable with a CI. But that's me. I know there are people out there who've never really known someone deaf who are terrified at the notion of being so. And for deaf people, even more so for the Deaf, lack of hearing just isn't frightening. WHY would you risk your precious child's health in experimental treatment for something that you yourself have adapted to or might not even perceive as a handicap in day to day life? If you were in that group, how would you regard people who are so terrified of what, to you, is a normal state of being that they'd risk death for their baby to avoid it?

[Broomstick]

Broomstick, AD, I'm not going to go over this point by point right with you right now. As I said in a post to Simon I was getting more upset out this than was reasonable and it wasn't doing anything good for anybody. I think that Simon is doing a far better job of expressing the concerns I had than I was.

Once again, sorry for coming off as a tool.

There's nothing wrong with stepping back when you're getting over emotional and/or re-evaluating your position based on new information. As far as I'm concerned, we're now discussing the ethics of this in a more general manner and not directed at you.

[S.L.Acker]

The closest thing might be the involvement I have in my local Kink scene, but they don't go out advocating for the acceptance of Kink.

That is because the kinky are not a persecuted minority group, and a person can be kinky in private, but not in public. Being kinky is already socially acceptable (within limits), so long as one does not go to work in a gimp suit.

I'd disagree with that assessment of things actually, there are a fair few laws that have been leveled directly at shutting down Kinky porn. There is still the mainstream idea that BDSM is abusive to women, or that male submissive have something wrong with them. It might not be on the same level as the pure hatred that is leveled at the LGBT community, but dismissing it out of hand is pretty ignorant.

This in spite of Kink being a major part of people's lives in much the same way that being Gay is

No. It is not. Being a Sub is not something someone puts on the list of Top 5 Things that Describe You. Most people will list their Sex, Nationality, Religion and a few other things first. Axes of primary self identification. Gay is on the list. Deaf is on the List. Kink is not. That said, the activism groups are a bit different. Most people who are politically active do it part time. The full timers however, are the ones who write the insane press releases, and in the case of the gay community, made sure we lost the prop 8 fight in CA. They are also the envirohippies who believe in Giaia and all that...

I'm sorry, but as a submissive male myself this is flat out wrong. I don't have some definite listing of how I define myself, but it's an important part of who I am. However it's also not something that dominates my life, I'm not just one thing.

I know that the level of discrimination is much different and it's not the best example but it's the closest thing I've been involved in and it's mostly low key.

Which is why your experiences are irrelevant. You are not in an activist community. You are in the Dark Side equivalent of a Unitarian church, where the sort of crazy you see is eccentric, not loud and angry.

But imagine if you were. Imagine if the people who enjoy being suspended by their naked flesh from ceiling hooks were the ones who got all the air time.

I wouldn't care, I don't think that Kink is harmful. You won't see anybody in the community saying that kids should be raised to enjoy certain acts at the expense of others. Also some of the more extreme displays, if done well, could at least get people into it as an 'art' thing. It might have a negative effect in how some people view the community, but on a whole what does Kink have to gain by getting in people's faces?

Identify with who you are and not a single defining trait about yourself and you don't get this situation.

And a big part of who they are is wrapped up in that language and culture. It is to the point that their inner monologue is in sign language. Remember, many of these people have never processed sound, so they dont even think in verbal english.

It's a big part of who they are, however it's also not the only thing about them. Deaf culture is not the only culture that the Deaf can belong to. If they choose never to leave the safety of that culture that's their issue.

It'd would be like you bitching about total acceptance of gays because it ruins your special culture. It makes no sense.

More like bitching about a neuro-surgical treatment for infant gays.

Ensuring nobody needs to live without hearing isn't really the same as altering sexuality. Wiping out deafness isn't even close to eliminating an branch of human sexuality.

That worries me too, being gay isn't a disability and thus not something to wipe out. It's not even close to being deaf.

Both parts of those are arguable. I cannot have my own children... well I could, if I wanted to find workarounds like a surrogate. I WILL find it more difficult to find housing and employment (outright discrimination need never even be involved, and even if it were, it is nect to impossible to prove), I am subject to persecution including physical violence (and have been assaulted. Repeatedly). This negatively impacts my quality of life, even if it is not a technical disability.

This is currently a social thing, it's shitty and it isn't right, but you don't lack for anything a straight person does.

The difficulties in having children is bad, I can see why that would be an issue, but you still have options. While neither of you can carry the child, you can ensure that the child is a mix of you and your partners genes. You can still have a child that is of the two of you.

I don't hate on all deaf people, or even all Deaf people. However it's pretty clear that they see their impairment as something special to build their lives around.

Everyone builds their life around a few key features of themselves. I build my life around my love of nature and reason. Others do things differently, and deafness is VERY significant when you think about all of the facets of one's life that it affects. It makes sense that it, and the culture surrounding it, would become very important for someone's life.

I suppose that's true, however I don't build my life around something I can't do, neither did you. Deaf culture revolves almost entirely around the lack of a sense. Yes, it makes sense that they do this, however it's also not really something worth fighting to keep in the face of improving treatments.

No, it's a disability anyway. It means you can't preform jobs or enjoy things that the majority of people take for granted.

There are a lot of jobs closed to you by accident of birth. If you are too big, you cannot be a racing jockey or fighter pilot, same with poor vision and any number of things. Would you like a list including not being able to work at hooters if you are male or a somewhat homely woman? How is deafness any different?

Additionally, sure, they cannot enjoy things you take for granted. However, they can do things you cannot. The parts of the temporal lobe that process sound dont just become empty real estate. They get re-wired to do other shit, like processing sight and touch. Hell, it is the reason many blind people can echolocate. Their visual cortex gets re-wired to process sound and touch. It is why deaf people can feel music instead of hear it. Tactile gets dialed to 12 in some cases.

There is absolutely no way to compare the two conditions on the ability to experience things. None. If the dead had a higher rate of depression I might agree with you, but they dont. They have different experiences, but those experiences cannot by any objective definition be considered inferior.

That said, there are certain.. dangers... like traffic, where hearing would help.

I hadn't thought of things that way.

I'm just saying it's not all that altruistic because every group would rather you know their language.

Consider the numbers. There are 500k deaf people in the US. By contrast, there are 15-ish million gay people. There are enough gay people in the US to throw public parades in every major city, have our own bars, and have our own little districts of cities. There are not enough deaf people to do that. There are deaf churches, athletic leagues etc (you know, potlucks and things). There just are not enough deaf people, and hey are too distributed, for them to do big ticket outreach events like the gays, jews, muslims etc can. Hell, it is not uncommon when deaf people are introduced to eachother (as far as have read), for them to go over other deaf people they know, and find common friends rather quickly. It is that small. Instead, they promote their language so that people can join them in the smaller gatherings they do (hearing friends and such) and I am sure that if you talk to a Deaf person and think to ask, they will recommend some good art and literature made by deaf people. There used to be fixed location deaf social clubs, but those collapsed in the 1970s due to technological advances making them unnecessary.

Another angle I hadn't thought to look at.

So you would be fine with somebody going up to you and saying, "Hey, gay dude, can I borrow a quarter for the bus?" If somebody called me a hearie they would have started off on the wrong foot.

No, I would not be. But I dont walk up to someone and say "hey straight person". I use their name if I know it, and if I dont, I find out. If I am writing an open letter to straight people, yes, I will address it "Dear Straight People of the United States, I have a favor to ask. Please reign in the bigoted section of your population. I really do not appreciate this chipped tooth. Thanks."

And I do not object if, in a speech, someone like Obama says "and to gay and lesbian americans everywhere..."

I think the difference is that straight is a common and accept term for heterosexual people, straight people will refer to themselves as such. Nobody who isn't deaf will think of themselves as hearie.

I'm sorry, but taking the position that hearing is superior to not hearing isn't nearly the same. In fact it's the only logical stance to take. Thus Audist is either a meaningless term or one meant to single people out.

From YOUR set of premises. See above for arguments regarding them. If you start from the premise that deafness is simply a difference that does not necessarily imply disability, then there is no difference between you, and a racist.

If deafness was really just a difference it wouldn't be classed as a disability and require special class. If it was just a difference people who lost hearing would adjust rapidly. I'm not going to call it the worst thing that can happen to somebody, but calling it just a difference isn't doing it justice.

Broomstick, AD, I'm not going to go over this point by point right with you right now. As I said in a post to Simon I was getting more upset out this than was reasonable and it wasn't doing anything good for anybody. I think that Simon is doing a far better job of expressing the concerns I had than I was.

Once again, sorry for coming off as a tool.

There's nothing wrong with stepping back when you're getting over emotional and/or re-evaluating your position based on new information. As far as I'm concerned, we're now discussing the ethics of this in a more general manner and not directed at you.

Just trying to make my position known. I will get to parts of your arguments against me soon, I just had more personal reason to start with AD's post.

[Simon_Jester]

From the bioethics angle, much of the problem would come up in any experimental treatment. This one in particular cannot possibly work on anyone but an infant, either they develop it for infants or they never develop it at all. At least, not for decades until we really master stem cell technology, which will probably involve us having to do tests very similar to this on other people with severe medical problems- that's not avoiding the bioethics problem, that's just shuffling it around.

For almost any experimental treatment, if you ask "what drives people to seek it out," the answers will often be some combination of desperation, recklessness, and irrational fear. In pediatric medicine, the experimental treatments will always be the ones sought out by desperate parents; if we consider that a show-stopper, then research into pediatric medicine becomes impossible.

I understand that there's a very high bioethical bar here, but I don't like the idea of systematically shutting down research in areas like this in order to avoid ever having to perform a dangerous experiment on human subjects. That strikes me as likely to cost more than it saves.

[Alyrium Denryle]

I'd disagree with that assessment of things actually, there are a fair few laws that have been leveled directly at shutting down Kinky porn. There is still the mainstream idea that BDSM is abusive to women, or that male submissive have something wrong with them. It might not be on the same level as the pure hatred that is leveled at the LGBT community, but dismissing it out of hand is pretty ignorant.

That is fair. Mea Culpa.

I'm sorry, but as a submissive male myself this is flat out wrong. I don't have some definite listing of how I define myself, but it's an important part of who I am. However it's also not something that dominates my life, I'm not just one thing.

Again, mea culpa. I should clarify. There is an entire field of psychology focused on how people perceive themselves. You can think of them like sets of smaller and smaller concentric circles, where if ranked in order of importance (or the first that come to mind, depending on methodology) the really big shit comes first. Someone's gender, nationality, religion, race etc. If I were to ban someone's religion, people will go to extraordinary lengths to maintain that identity, including giving up their lives or passing on multigenerational paranoia and adaptive practices to their children. For example, the inquisition officially ended in spain in the 19th century, and into the 20th century, there were still crypto jews, they are still kinda paranoid, and they have practices that put them at odds with other jews because they had to adapt to being crypto jews. If someone's gender does not match their actual genitals, the person's brain literally cannot handle seeing themselves in a mirror and you get problems like gender dysmorphia.

Deafness seems to be one of those. It is not everything, but it becomes a REALLY big part of who someone is. I spoke too swiftly perhaps when I excluded kink from the list.

I wouldn't care, I don't think that Kink is harmful. You won't see anybody in the community saying that kids should be raised to enjoy certain acts at the expense of others. Also some of the more extreme displays, if done well, could at least get people into it as an 'art' thing. It might have a negative effect in how some people view the community, but on a whole what does Kink have to gain by getting in people's faces?

You missed my point, a bit. Imagine you guys were trying to get something done, like convince society as a whole that male subs have nothing wrong with them. Now imagine that the suspension people were the ones everyone saw. Think you might have a harder time convincing "normal" people that there is nothing wrong with male subs?

It is not WRONG to like being suspended. However, it is a bit... beyond the pale of experience for most people. In the same way, the hard core Deaf raise some very salient concerns, but they are so worked up about it that others have difficulty empathizing.

Ensuring nobody needs to live without hearing isn't really the same as altering sexuality. Wiping out deafness isn't even close to eliminating an branch of human sexuality.

Why not? If you start from the premise that the deaf do not have a diminished quality of life due to their deafness, which data and their own testimony seem to indicate, there really is no difference. Sure, they cannot hear. But as I have said, that does not make their experience of the world any less meaningful. It is thus just as much a wiping out of a branch of human experience as wiping out homosexuality would be.

That was also not my actual point. My point is that a procedure like what is proposed is invasive, has a completely unknown chance of success, and in this case is an early stage clinical trial and they are not even reasonably confident it is safe. They are literally injecting stem cells and hoping they self organize and differentiate into a functioning cochlea without the signals that make them do it in normal development, and not have some subgroup of them settle in and start their own construction projects inside the head of a child who's nervous system is not done developing. It is a procedure that can only help a small subgroup of deaf infants, and like implants, probably wont always work. However, by the time whether it works or not is really figured out, it may be too late for the kid to learn language. Combine that with what might happen if it does not work (angry tumors come to mind)... My god. I do not know how the FDA approved this. The long term risk to benefit ratio is way the fuck too large.

It would be one thing if they could start with adults who could consent to the risk, get the kinks worked out, and then make it work with little kids. Instead, they are doing this to infants who cannot consent, on the go-ahead of distraught parents who are not at all thinking clearly or rationally. No. This is a bioethical clusterfuck. Considering how large a deficit being deaf is to quality of life in modern society (not a big one, if at all). No. Were it a life saving treatment (a treatment for Tay Sachs, ALD or some other early-childhood killer) I could approve... but I cannot condone this. Not anymore than I could approve of a similar procedure to re-wire the brains of potentially gay babies to ensure they grow up straight.

This is currently a social thing, it's shitty and it isn't right, but you don't lack for anything a straight person does.

That distinction really is irrelevant. Whether a disability is social or physical does not obviate the fact that it causes harm. Gay people are more likely to suffer psychologically than deaf people, to the point of vastly elevated suicide risk, so to say that deafness--despite not causing significant decreases in quality of life or increases in suicide risk--is worse... well, you can see why that might fall flat.

Remember, if not having something does not hurt anyone, it cannot be that bad. So even if something is a technical "disability" in the sense that someone is missing X that normally develops in people, and they find their life fulfilling, who the hell are we to say otherwise? Their experiences are different, sure. Different to the point that our minds cannot actually process what they might be like, sure. But not necessarily bad. I miss out on sex with vagina, something I am told is wonderful. I also do not experience the apparent joys of boob fondling. That does not by itself diminish my quality of life. And yes, I have talked to people who find that completely unbelievable. Now, there is other shit that diminishes my quality of life, like the fact that if I were medically incapacitated, my "father" has more of a say in what happens to me than my boyfriend does, and WOULD win if he challenged my advance directive in court. However, the simple fact that I dont know what vagina feels like does not bother me.

It would be highly arrogant (and dare I say, pretentious) of me to presume that I am a better judge of the quality of a person's life than the person living it. Some people who acquire deafness later might report transitory trauma, but they get used to it and go on to live happy lives, and if given the opportunity refuse CIs. Who am I to judge them for that choice? Who am I to presume to dictate to an infant that one way of experiencing life is inherently superior to another, unless the suffering is plainly evident and intractible as is the case in illnesses like Tay Sachs or extreme premature birth?

Simply put, lacking something and thus experiencing the world differently does not necessarily entail reduction in quality of life, and if there is no such reduction, risk taking to "alleviate" that lack by well-intentioned people who lack perspective is not just unjustified, but it is arrogant and dangerous.

I suppose that's true, however I don't build my life around something I can't do, neither did you. Deaf culture revolves almost entirely around the lack of a sense.

And? This seems like a meaningless distinction to make. They simply dont see it that way. They have turned something that might be considered a handicap into something meaningful and positive for them. If only everyone could be that up-beat.

Yes, it makes sense that they do this, however it's also not really something worth fighting to keep in the face of improving treatments.

According to whom? You? Shouldn't the people affected be the ones to make that call?

I think the difference is that straight is a common and accept term for heterosexual people, straight people will refer to themselves as such. Nobody who isn't deaf will think of themselves as hearie.

That has more to do with the number of gay people vs deaf people though, and how much sexuality is in the public consciousness. Until something like this comes up, how often do you think about your ability to hear and how that differentiates you from the deaf? Not very often I imagine. Hell, I am prone to hours of navel-gazing, and it seldom comes up, even for me. Gay people are, pardon the pun Out and Proud. Deaf people are not exactly a vocal minority (I do love my puns), it just does not come up as much. That does not stop them from having their own terms. They have their own god damn language family, for fuck's sake. Of course they are going to have their own word for people who can hear. I bet it has a specific sign too, as opposed to something they have to spell, or use other signs to define like the sign language version of a gigantic spontaneous german compound noun. There is a lot of short-hand (*snickers* I cant help it) in sign language as far as I can tell.

If deafness was really just a difference it wouldn't be classed as a disability and require special class.

Technical and legal classifications are different from quality of life issues. Our society is, afterall, set up to accommodate the majority, and that vast majority can hear. Certain types of dwarfism do not have other medical complications and are not really disabilities in the sense that they cause harm to dwarves, but the vast majority of book-cases are designed for tall people. So, you have step ladders in your library, mandated by law so that the dwarves can reach. It is no reason to try to medically correct those types of dwarfism.

If I go to a university set up for deaf people, suddenly I am at a disadvantage and could be called "disabled". Afterall, I cannot study at night because the dorm rules are set up to accommodate deaf people and the concept of quiet hours during finals week is one of those irrelevancies I would expect to not be in place. And the guy next door likes the feel of radio static, or Wagner dialed to 14.

A lot of things are classified as disabilities because of their social context (another reason why making a distinction between gay and deaf falls flat) and not because they inherently reduce quality of life. Were I a minority hearing person inside a deaf dominated world, I would be considered disabled because I would be subject to sensory overload because no one bothers to control volume... I would probably (ironically) need to wear noise canceling ear muffs and request certain accommodations in public spaces. Not sure what those would be because I have little concept of what a deaf run world might look like, but there would be something.

Now I have a mental image of being a giant in a dwarf dominated world... feeling like I have to crawl through rat tunnels because they dont bother making doorways and hallways over 5 feet in height.

I understand that there's a very high bioethical bar here, but I don't like the idea of systematically shutting down research in areas like this in order to avoid ever having to perform a dangerous experiment on human subjects. That strikes me as likely to cost more than it saves.

In this case, it is a balance between the theraputic benefit and the risk. Risk alone should not be a show stopper, but for little real gain... yeah... no.

[S.L.Acker]

I think we're getting each other here, without the emotion I can accept that the position I'm taking is full of assumptions. I really can't see the Deaf side of this as well as I would need to to go on further on this. Thank you for taking this stance instead of looking at what I had posted before and ramming it down my throat.

[Alyrium Denryle]

I think we're getting each other here, without the emotion I can accept that the position I'm taking is full of assumptions. I really can't see the Deaf side of this as well as I would need to to go on further on this. Thank you for taking this stance instead of looking at what I had posted before and ramming it down my throat.

I try to be even handed and keep my flaming down to sarcastic barbs until a wall of ignorance is erected. We're good.

[Terralthra]

From the bioethics angle, much of the problem would come up in any experimental treatment. This one in particular cannot possibly work on anyone but an infant, either they develop it for infants or they never develop it at all. At least, not for decades until we really master stem cell technology, which will probably involve us having to do tests very similar to this on other people with severe medical problems- that's not avoiding the bioethics problem, that's just shuffling it around.

For almost any experimental treatment, if you ask "what drives people to seek it out," the answers will often be some combination of desperation, recklessness, and irrational fear. In pediatric medicine, the experimental treatments will always be the ones sought out by desperate parents; if we consider that a show-stopper, then research into pediatric medicine becomes impossible.

I understand that there's a very high bioethical bar here, but I don't like the idea of systematically shutting down research in areas like this in order to avoid ever having to perform a dangerous experiment on human subjects. That strikes me as likely to cost more than it saves.

This procedure could work on an adult, if a way could be found to preserve umbilical blood of a large enough group that it was guaranteed to have a sufficient sample size suffering sensorineural hearing loss.

Also, I don't understand how it's just "shuffling the problem around" to test procedures like this on more severe medical conditions. Deafness is not a death sentence, nor is it completely debilitating. Find conditions whose effects are worse than the potential risks associated with umbilical stem cell treatment's worst case and test on those conditions for safety.

[Lord Zentei]

I admit that my sympathy meter is hovering near zero. In particular it is this which I find particularly offensive:

These are the concerns of the Deaf community: not that their own children will be removed from their culture, but that the children of hearing parents will be kept out of the Deaf community by force and ignorance, even if the cures are partial at best (in other words, even if ASL would still be a useful language for them).

"By force and ignorance", indeed. So, because deaf people have created a Deaf culture, therefore a cure for deafness should be withheld from the children of those who are not part of their community, and the lack of such a ban would be "force", and the presence of new medical technology would be "ignorance".

Also "Audism" is a bullshit concept, unless you're talking about active maltreatment of deaf people - as opposed to merely the objectively true position that deafness is a disability, and that people should have the OPTION of treating their children. Anyway, it's not as if all people would choose a treatment, just as not everyone chooses to use a hearing implant (which I understand certain people object to also).

But even if it is true that a sufficient majority of people would choose this treatment to wipe out Deaf culture in practice, I would still remain unsympathetic: it would pretty much be a demonstration that deafness is something undesirable in the views of people, especially if most deaf people would also choose this for their children. Cultures change and die out, people move on.


Bottom line: a culture whose continuation depends on the denial of medical treatment for children, including in particular the children of those outside of that culture, is a culture which does not deserve to exist - regardless of which culture that is. If that position makes me a bad person, I guess that's too bad.

[Cesario]

I'm curious, if it is to be an agreed upon truth that not being able to hear is not intrinsically worse than being able to hear, why should we not allow deaf people to destroy the hearing ability of their children surgically?

[Alyrium Denryle]

I'm curious, if it is to be an agreed upon truth that not being able to hear is not intrinsically worse than being able to hear, why should we not allow deaf people to destroy the hearing ability of their children surgically?

Because in both cases, parents do not own their children and unless the matter is life or death, they ought not be permitted to alter their children to suit their own desires.

So, because deaf people have created a Deaf culture, therefore a cure for deafness should be withheld from the children of those who are not part of their community, and the lack of such a ban would be "force", and the presence of new medical technology would be "ignorance".

See the numerous posts above regarding lack of perspective, huge risks associated with purported cures, and the Horrible Shit that has happened to deaf children at the hands of well meaning but ignorant and forceful adults over the years.

Also "Audism" is a bullshit concept, unless you're talking about active maltreatment of deaf people - as opposed to merely the objectively true position that deafness is a disability

See above on how that position is not, in fact, objectively true. Please, read threads before you comment in them.

and that people should have the OPTION of treating their children

And lets completely discount the risks.

I will post this again, just so you see it from their perspective:

"This disability is so bad that we are going to risk giving children a lethal tumor inside their head to give them a chance at being closer to normal"

"Wait what? Um... I have that "condition" and I dont actually feel all that disabled, and you really should not be experimenting on children in such a risky way so... Fuck no!"

"How dare you wish your disability on others!?"

"FUCK YOU!"

[Lord Zentei]

Aly, you're not a bad guy, nor are you stupid. But you really need to do something about that big stick you've got up your ass.

See the numerous posts above regarding lack of perspective, huge risks associated with purported cures, and the Horrible Shit that has happened to deaf children at the hands of well meaning but ignorant and forceful adults over the years.

This is a load of horse shit, which has nothing to do with my point. The objection raised with regards to this possible treatment which I responded to had nothing to do with the risks associated with the treatment, but only the existence of the treatment in principle. Neither does the maltreatment of deaf people in the past have anything to do with the legitimacy of a cure for deafness.

See above on how that position is not, in fact, objectively true. Please, read threads before you comment in them.

I read it. It's horse shit.

And lets completely discount the risks.

See point I raised above.

I will post this again, just so you see it from their perspective:

"This disability is so bad that we are going to risk giving children a lethal tumor inside their head to give them a chance at being closer to normal"

"Wait what? Um... I have that "condition" and I dont actually feel all that disabled, and you really should not be experimenting on children in such a risky way so... Fuck no!"

"How dare you wish your disability on others!?"

"FUCK YOU!"

And my response: "Once again: my reaction to your concerns is not about the risks, but about your objection to the existence of a treatment. And because YOU don't feel disabled, therefore OTHER PEOPLE should not have the option to choose a treatment? Go fuck yourselves. No seriously... go fuck yourselves".

[Cesario]

I'm curious, if it is to be an agreed upon truth that not being able to hear is not intrinsically worse than being able to hear, why should we not allow deaf people to destroy the hearing ability of their children surgically?

Because in both cases, parents do not own their children and unless the matter is life or death, they ought not be permitted to alter their children to suit their own desires.

So are we to treat this as a "obey the will of nature/God/the universe/Great Cthulu/Flying Spagetti Monster", then?

The child's choice should be paramount, since it's the child that will be the one who has to live with the situation. As the child cannot consent, the most appropriate option would be the one that leaves the most ability to choose in the child's hands waiting for when the child can consent.

The child can quite trivially choose to deafen himself later in life. Choosing to become able to hear after the window is closed would seem to be more difficult.

[Alyrium Denryle]

I happen to like the stick up my ass. It fills me with perverse glee every time I shift in my chair just right.

I read it. It's horse shit.

And this is based on what? I dont see an argument here beyond your say-so, doubtless borne out of your own thoughtful and even-handed consideration of all factors involved.

Oh... wait.

If you think my argument is horse shit, show WHY it is horse shit beyond tautological statements. If the position is so wrong-headed, prove me wrong.

but only the existence of the treatment in principle. Neither does the maltreatment of deaf people in the past have anything to do with the legitimacy of a cure for deafness.

The existence of treatments for deaf children have historically lead to A) the horrific treatment of deaf children, and B) amount to a slap in the face to an entire culture. Parents really CANT stomach the idea of their child being deaf, and have taken unjustifiable risks--like this clinical trial--to "cure" them of something that need not actually be a handicap. They might be raising the wrong arguments, but that does not mean the concerns underlying those arguments are not valid. Besides, I am arguing the point on my terms, not theirs.

And because YOU don't feel disabled, therefore OTHER PEOPLE should not have the option to choose a treatment? Go fuck yourselves.

This is not about the deaf person having options. This is about the parents of a deaf person having options, and as has been exhaustively covered in this thread, well-meaning but misguided and irrational parents can and have done a LOT of harm to their children, based on a misconception about the quality of life for deaf people.

So are we to treat this as a "obey the will of nature/God/the universe/Great Cthulu/Flying Spagetti Monster", then?

Way to build your own strawman and set it on fire. It is simply not the parent's choice to make. I have gone over this at length. But I will summarize the choice list.

1) You can deal with the hand the universe dealt you. In this case, there are plenty of adaptive technologies and other such mechanisms that will lead to an otherwise normal deaf child leading a happy productive and full life, with no adverse consequences other than intangible things they wont miss like certain perceptions of mozart

2) You can take a gigantic risk. A cochlear implant may or may not work at all, it may partially work. In the time it takes to figure that out, the window for language development may have closed, and the kid will be at an increased risk for potentially lethal infections. Their experience of life is still different from everyone else, they will never enjoy music the same way we do anyway, they may or may not still need to learn ASL and take advantage of the same adaptive technology a deaf person would, and that is if the implant works.

3) You can take an even bigger risk like this clinical trial, where the kid is likely to develop malignant tumors, and the treatment is very unlikely to have any theraputic benefit.

What would you choose? Do you have the right to make that choice for someone else? Fuck No. This is not the choice of getting ears pierced. This is a life-changing choice that can only be ethically made by the person affected. Particularly when the risks are this large. A kid cannot consent to the risks, and should not have those risks foisted on them. Not unless the theraputic benefit is absolutely huge as in conditions that lead a child to be immobile, or in constant pain, or dead before the age of five.

As the child cannot consent, the most appropriate option would be the one that leaves the most ability to choose in the child's hands waiting for when the child can consent.

Except we dont live in a world where doing that does not come with gigantic risks.

[Cesario]

So are we to treat this as a "obey the will of nature/God/the universe/Great Cthulu/Flying Spagetti Monster", then?

Way to build your own strawman and set it on fire. It is simply not the parent's choice to make.

If you want to say you're not bowing to the will of the Flying Spagetti Monster, then give me an explaination that doesn't rely on "you can't change someone from the state the Flying Spagetti Monster put them in". Choosing not to treat a condition is every bit as much a choice you're making for someone as choosing to cripple them yourself. The only way that becomes meaningfully different is if you're going to invoke God as the next best choice of who gets to make the decisions when the patient hasn't got the option.

I have gone over this at length. But I will summarize the choice list.

Okay, we'll go over it at length.

1) You can deal with the hand the universe dealt you.

Accept God's will. Wasn't the point of this you demonstrating that this wasn't what this was all about?

In this case, there are plenty of adaptive technologies and other such mechanisms that will lead to an otherwise normal deaf child leading a happy productive and full life, with no adverse consequences other than intangible things they wont miss like certain perceptions of mozart

So instead of the parent deciding what is and isn't important in place of the child, it's you who gets to decide what is and isn't important in place of the child?

2) You can take a gigantic risk. A cochlear implant may or may not work at all, it may partially work. In the time it takes to figure that out, the window for language development may have closed,

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

and the kid will be at an increased risk for potentially lethal infections.

You'd be amazed at the number of potentially lethal things we allow parents to inflict on their children. We let them drive around in a car with those unconsenting children, for example. And those car rides are a lot more trivial a thing than the ability to hear.

Their experience of life is still different from everyone else, they will never enjoy music the same way we do anyway, they may or may not still need to learn ASL and take advantage of the same adaptive technology a deaf person would, and that is if the implant works.

While this is interesting, why is it part of your argument?

3) You can take an even bigger risk like this clinical trial, where the kid is likely to develop malignant tumors, and the treatment is very unlikely to have any theraputic benefit.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

What would you choose?

The option that ballances the risks with the underlying moral principle that it ought to be the choice of the child, and I'm not the one who's goals and desires matter in the slightest. That my political philosophy or rights advocacy has no place at the table. If I feel the risks of the treatment are too great to ballance the potential improvement in the child's options, I opt for something else, but I never, never, never deny the child treatment because I'm bowing to the will of God or because I want to preserve a culture by forcing my child into it.

Do you have the right to make that choice for someone else? Fuck No.

So who does? Again, are we back to bowing to the will of God rather than trying to do what we can to keep the child's options as open as we can until they can make their own choices?

This is not the choice of getting ears pierced.

I'm against that too. Because it isn't your choice to pierce a child's ears any more than it's your choice to puncture their eardrums.

This is a life-changing choice that can only be ethically made by the person affected. Particularly when the risks are this large. A kid cannot consent to the risks, and should not have those risks foisted on them.

How do you feel about vaccination?

Not unless the theraputic benefit is absolutely huge as in conditions that lead a child to be immobile, or in constant pain, or dead before the age of five.

Why are those exceptions?

As the child cannot consent, the most appropriate option would be the one that leaves the most ability to choose in the child's hands waiting for when the child can consent.

Except we dont live in a world where doing that does not come with gigantic risks.

So you agree with me in principle but feel this particular procedure is more risky than is reasonable?

[Terralthra]

I admit that my sympathy meter is hovering near zero. In particular it is this which I find particularly offensive:

These are the concerns of the Deaf community: not that their own children will be removed from their culture, but that the children of hearing parents will be kept out of the Deaf community by force and ignorance, even if the cures are partial at best (in other words, even if ASL would still be a useful language for them).

"By force and ignorance", indeed. So, because deaf people have created a Deaf culture, therefore a cure for deafness should be withheld from the children of those who are not part of their community, and the lack of such a ban would be "force", and the presence of new medical technology would be "ignorance".

No, the "force" involved would be things like tying the hands of deaf children behind their backs and instituting corporal punishment for gesturing. This is treatment deaf children have undergone in living memory, and up until the 80s was considered standard procedure for deaf children with cochlear implants, regardless of the hearing capability achieved by the implantation. The "ignorance" would be of hearing parents who do not understand linguistic development or the existence/utility of ASL, the probable outcomes and risks for various 'cures' for deafness, and the confluence of these influences on a prelingual child.

Also "Audism" is a bullshit concept, unless you're talking about active maltreatment of deaf people

Yes, that is what it refers to, and more broadly, the belief that a Deaf person's life is inherently less meaningful or fulfilling due to a lack of hearing.

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

Nothing in cochlear implants per se. However, some audiologists recommend things such as preventing or punishing children with CIs from gesturing or attempting to communicate non-lingually. Ignoring that normal cognitive development allows children to communicate using gestures before they can use spoken language (cf. babysign), this attitude when applied to deaf children with CIs who do not have sufficient hearing to use spoken language leaves them with inadequate linguistic development during the key phases of cognitive development, and essentially cripples their ability to use language at all.

As previously stated, most Deaf people no longer oppose cochlear implants, whether in children or adults, so long as the implant recipients are not taught using "oral-only" techniques. Most Deaf advocacy groups and Deaf schools recommend/utilize "Total Communication," which emphasizes encouraging those with hearing loss to communicate through whatever media work best for them. Also called the "Whatever Works" approach, for obvious reasons. Click here for further information.

[Broomstick]

So are we to treat this as a "obey the will of nature/God/the universe/Great Cthulu/Flying Spagetti Monster", then?

Way to build your own strawman and set it on fire. It is simply not the parent's choice to make.

If you want to say you're not bowing to the will of the Flying Spagetti Monster, then give me an explaination that doesn't rely on "you can't change someone from the state the Flying Spagetti Monster put them in". Choosing not to treat a condition is every bit as much a choice you're making for someone as choosing to cripple them yourself.

Not everything NEEDS to be treated. There is a point at which further treatment carries more risk than halting treatment. Some things really come down to a choice between alternatives. Hence, the ancient medical dictum "First, do no harm."

There is no question that a competent adult has a right to refuse treatment even if that can lead to death. The problem is we are talking about children too young to be either competent or consenting

In this case, there are plenty of adaptive technologies and other such mechanisms that will lead to an otherwise normal deaf child leading a happy productive and full life, with no adverse consequences other than intangible things they wont miss like certain perceptions of mozart

So instead of the parent deciding what is and isn't important in place of the child, it's you who gets to decide what is and isn't important in place of the child?

Parent do not automatically know what's best for their child. This is particuarly true of children with disabilities. Parents can become educated, but they don't start out that way and they aren't doctors/therapists/etc. Ideally, parents will ally with trained experts and everyone will make rational, unemotional decisions. That's not the real world, however. Parents sometimes make decisions based on fear and ignorance, and in the case of a child that can result in real harm.

It's not that Alyrium gets to decide, the point is that parents are not always the best decision makers and sometimes experts - which might well include adults who live with a particular disability - should make the decisions instead of parents.

There is NOT an easy, one-time answer for these situations. They need to be decided on a case-by-case basis.

2) You can take a gigantic risk. A cochlear implant may or may not work at all, it may partially work. In the time it takes to figure that out, the window for language development may have closed,

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

The mechanism is not the CI itself but attitudes of those around the child. In the past, some people (not all) had the idea that a child with a CI should be prevented from using Sign to force them to rely more on the implant. If the CI wasn't working out so well, though, that could really fuck up the kid.

The fact is, a kid with a working CI doesn't need to be encouraged to use it, any more than a hearing kid needs to be encourage to use his or her organic ears. If the input is usable and useful it will be used.

The most important thing for a young child who is hearing impaired is that the language center of the brain is properly developed. That is absolutely essential to the future ability to function, and will have a large impact on future happiness. HOW that is done, whether through audible speech or Sign or a combination, is not so important as that it IS done. The problem is, old attitudes about the inferiority of Sign still exist. Fear still exist. Misunderstandings and ignorance still exist. Really, there is no downside to any child being taught Sign as well as a verbal language. Both stimulate the brain's language center. Yet there are still people who would deny Sign to deaf children. It's tragic.

and the kid will be at an increased risk for potentially lethal infections.

You'd be amazed at the number of potentially lethal things we allow parents to inflict on their children. We let them drive around in a car with those unconsenting children, for example. And those car rides are a lot more trivial a thing than the ability to hear.

Parents are required to install protective equipment in their vehicles when transporting their children to increase their safety. The odds of any particular trip resulting in an accident is low, and the child gets benefit through things like being taken to school for an education, or to relatives homes for social stimulation, and so forth. Thus, it is seems as an acceptable risk.

Surgery is not trivial. When CI's were new and experimental implanting them in children was highly controversial, and no doubt many children who today would have qualified for one did not get one, and now as adults would not find them particularly useful. So long as those children were allowed to use Sign and benefited from a proper education the harm of denying them those early implants (which were more problematic than the current ones) was minor and they have a good chance of leading meaningful, full, and happy lives. Thanks to pioneering adults who adopted CI's, allowing surgeons and engineers to refine the devices and procedures, the risk of implanting one these days is relatively low and thus it is now acceptable to perform this on non-consenting children. We have a good idea of the risk/benefit ratio, the newer implantations have less risk of subsequent infections, all children (and adults) with CI's should get meningitis vaccines, and the risk continues to fall even while the technology improves.

With stem cell therapy, we don't know the exact risks. We DO know that stem cell trials in adults have resulted in the wrong structures forming, unwanted structures forming, sudden deaths where we don't always know the mechanism, and often nothing at all. This makes such experimentation problematic even in adults, much less children. If the disorder being treated was a matter of life or death that might make it justifiable but deafness is no such thing. There are so many other options, even for the most deaf of individuals, that I don't see where such a risk is acceptable in infants, which is really what we're talking about here.

3) You can take an even bigger risk like this clinical trial, where the kid is likely to develop malignant tumors, and the treatment is very unlikely to have any theraputic benefit.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

Based on other clinical trials using stem cell therapy, most of the time it just doesn't work. It can be very difficult just to get the stem cells into the proper location, and then you have to somehow signal them to start a development process, guide it, and then tell them to stop growing when appropriate. This is a very complex task we don't fully understand. Again, based on other clinical trials, participants have developed tumors (in some cases fatal), unexpected side effects (some of them leading to suicide), and just up and died for reasons that the researchers just weren't sure about. So the exact risks are unknown, but probably risks can be pretty damn ugly.

Personally, I feel we should get a much better grip on stem cell use in general, either in the lab or in consenting adults, before trying this on kids. And when we do try it on kids, we should start with life-or-death problems and not problems like deafness for which accommodations exist that allow a high quality of life without the risk of experimentation of this sort.

Keep in mind, too, that a kid with a CI implanted and a developed language center in the brain should, in theory, be able to utilize stem cells later to regrow a damaged organic structure. Using a CI should keep the window open to use a fully developed stem cell technology later down the line, or to consent to experimentation as an adult.

Do you have the right to make that choice for someone else? Fuck No.

So who does? Again, are we back to bowing to the will of God rather than trying to do what we can to keep the child's options as open as we can until they can make their own choices?

That IS the big question in medical ethics. These days, it's often a committee that includes not only medical and technological experts but more and more frequently an adult who has the disability in question. Hell, back when I worked with medical researchers we often included lay people with the studied disease or disorder in the review process to get their input, as they were the sort of people who would have to live with the research results.

The really funny one was the research project we did concerning cochlear implants where the project lead was a deaf woman. Angry people would call her on the phone and scream at her that she just didn't understand deafness and their kids would never be able to function without X, Y, or Z. Of course, she couldn't hear them, so she had an interpreter relay the information to her in Sign. She replied to them using her own voice, though (she could also speak and lip-read Italian- have I mentioned that a LOT of deaf people are poly-lingual?) and often it wasn't until they met her in person they realize that she, like their children was deaf. As it happens, she was the woman I mentioned who was deaf due to brain damage and thus could not benefit from a CI. Somehow it just doesn't occur to them that a deaf person could also have a doctorate and be a scientific researcher. Despite being totally deaf.

So... when contemplating surgery on a child too young to consent, the usual practice is to assemble a group of people including parents, doctors, rehabilitation experts, and so on. It is also quite common to bring in parents of children with such disabilities or illnesses, and adults who have been such children, to discuss how living with such problems actually is. My own spouse has on occasion been part of this sort of thing. A co-worker of my father had a child with spina bifida and was panicking over worst-case scenarios and so forth, then my spouse and I show up and hey, yeah, there are real downsides to the birth defect but he obviously grew up, he's functional, he's smart, he got married, and has a pretty normal life so it's not hopeless.

When you're dealing with someone who can't give consent the current strategy is to get many viewpoints and try to reach a consensus in the person's best interest.

This is a life-changing choice that can only be ethically made by the person affected. Particularly when the risks are this large. A kid cannot consent to the risks, and should not have those risks foisted on them.

How do you feel about vaccination?

Vaccination has been around a long time and the risks are pretty well known. High risk groups can be identified and excused from vaccination. We have experience in managing negative outcomes. As a result, it skews the risk/benefit ratio to the point where the disease-protection benefit in appropriately chosen people way outweighs the potential risk, and on the rare occasion something does go wrong we have some clue what to do to treat the side effect.

This is markedly different from stem cell technology where we can't even get it work at all most of the time, we don't know what makes someone more or less likely to suffer negative outcomes, and when we they do happen we often don't have a real clue what to do and the doctors are left guessing at what should be done.

You really don't see a difference there?

Not unless the theraputic benefit is absolutely huge as in conditions that lead a child to be immobile, or in constant pain, or dead before the age of five.

Why are those exceptions?

Don't be deliberately stupid.

[Alyrium Denryle]

If you want to say you're not bowing to the will of the Flying Spagetti Monster, then give me an explaination that doesn't rely on "you can't change someone from the state the Flying Spagetti Monster put them in". Choosing not to treat a condition is every bit as much a choice you're making for someone as choosing to cripple them yourself. The only way that becomes meaningfully different is if you're going to invoke God as the next best choice of who gets to make the decisions when the patient hasn't got the option.

How to put it... it is something other than choice. I dont think parents have the right to make choices for their children who cannot consent. They have an absolute duty to do what is in the best interest of their child, within their means. That means that in the case where the child cannot consent, they have an absolute duty to maximize the chance of that child's future happiness, which necessarily entails not taking unnecessary risks. In some cases, yes, that can mean dealing with the hand the universe deals you in cases of deafness and certain other conditions, because the cure may well be worse than the disease. In other cases, it means fighting the universe tooth and nail. These are obligations. Prima facia duties. Not choices.

So instead of the parent deciding what is and isn't important in place of the child, it's you who gets to decide what is and isn't important in place of the child?

No. It is an objective risk/benefit calculation. Ideally, a parent would be a dispassionate guardian of their children. But they are not, often. They have certain expectations regarding their children that will color their judgement. More on how this can, has, and still does play out momentarily.

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

Hearing parents of deaf children often have... unrealistic expectations of what a CI can do for their child. So they will rationalize not learning or teaching sign language on the basis of "they have a CI, they can hear just fine" they have no ability to judge for themselves what their child actually can hear. You end up with situations where parents, seeing that their child can respond to sound (but cannot actually differentiate between words), talk to their child and do not use sign language. By the time they notice something is wrong, the language window closes. It also takes a while to become fluent in a language, and a parent simply may not be able to learn it well enough in the time they have to be effective if the window has not closed by the time they realize their is still functionally deaf.

A CI for someone who loses hearing as an adult or even older child can be a really good thing. However, for infants... the fallibility of a parent--especially one who is desperate for their child to be normal--is a rather large risk, and one counter-indicating CIs in infants. Honest and good people can and do disagree here, so calling a group of people with cultural experience seeing the wages of idiot parents, objecting to policy level use of CIs or child experimentation despicable is out of place and wrong-headed. This is why the choice should not be up to the parent. Instead, it should be up to an ethical review panel, that attaches conditions to the use of a childhood CI, and follows up. If the parent is fucking up and the child is in danger of never learning a language, then someone needs to step in for the benefit of that child. As it stands, the system is set up to give a parent who has no idea what the fuck they are doing ultimate power to make or break a child, and that is not acceptable.

Experimentation in the way described in the OP really is a manifestly bad idea, and should only be permitted in cases where the condition being treated is life threatening or disabling to the point of guaranteed reduced quality of life. Deafness does not qualify.

While this is interesting, why is it part of your argument?

The ratio between risk and theraputic benefit.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

Because I know how this shit works, and keep up with the literature. Stem cell trials have a tendency to go... poorly. It is very very hard to get stem cells into the right place and get them to do what you want them to do when you just inject them into a cavity like the inside of a damaged cochlea. It would be one thing if they were growing these things in vitro other otherwise ex situ and implanting them. They are not. They are hoping to throw them in situ without the necessary developmental signals, and that is a recipe for, at best, no effect, and at worse malignant tumors and systemic immune rejection. The majority of the confidence interval is in the range of "Fucked"

How do you feel about vaccination?

The risks of vaccination are low, the benefit of not dying from polio or other child-killing diseases high. Failure to vaccinate puts other children in danger. In my view, no parent should have the right to refuse vaccination on any grounds other than medical concerns such as immunosuppressive conditions.

Again, parents do not have rights over their children. They have duties and responsibilities. Sometimes those duties prohibit harmful treatments, in other cases they mandate necessary treatments, irrespective of the beliefs or predispositions of the parents.

In the case of religion... Well if the child of a JW needs a blood transfusion... God will understand. If he does not, then he is not God.

Why are those exceptions?

Dont be deliberately stupid.

So you agree with me in principle but feel this particular procedure is more risky than is reasonable?

Yes and no. I happen to think deafness is only a disability by technicality and social context. It does not by itself harm the deaf person's ability to enjoy life. Quality of life and the hedonic value of future choices are what matter. If the treatment for deafness or any condition has a serious potential to be worse than what is being treated, then it should not be foisted on someone who cannot make the choice themselves.

If I lose my leg as an adult and decide I want to risk my long term health in experimental leg regeneration experiments, that is my prerogative. If it happens as a child, my parents have no right to risk my long term health when a prosthetic would give me the best chance at a happy life. If that takes a government or hospital ethics panel stepping in and telling them to fuck off, so be it.

[Simon_Jester]

I'm going to have to ask again, though- how do we ever accomplish anything in pediatric medicine if we take the dictates of bioethics that way? If we have a treatment which we are not sure will work on a child, we can't use it for an experiment, but if we can't do the experiment, we'll never know if it works or be able to develop a version that does.

I can accept that if this particular experiment is very cavalier about risk, it should be dropped- but where's the line? How do we adapt adult treatments to children when things are uncertain? What do we do if there's some useful treatment that can be given to children but just won't work on adults, for some reason? Is that treatment forever barred from development unless it's a matter of desperate, absolute life-or-death need?

[Alyrium Denryle]

I'm going to have to ask again, though- how do we ever accomplish anything in pediatric medicine if we take the dictates of bioethics that way? If we have a treatment which we are not sure will work on a child, we can't use it for an experiment, but if we can't do the experiment, we'll never know if it works or be able to develop a version that does.

Most things in pediatrics are adaptations of procedures and treatments done on adults. Chemotherapy for example. In many other cases, we are talking about things that have such a horrible effect on children that the risk is justified on its face.

How do we adapt adult treatments to children when things are uncertain? What do we do if there's some useful treatment that can be given to children but just won't work on adults, for some reason?

Well, keep in mind, the medical encyclopedia of things is huge. But it depends on what you are doing. For a great many even experimental treatments, you at least know what the class of drug does, or you know how a tissue you are playing around with works. So, you can make solid predictions about the safety and theraputic benefit of a treatment.

Before I get more specific, you would need to specify a condition.

[Terralthra]

I'm going to have to ask again, though- how do we ever accomplish anything in pediatric medicine if we take the dictates of bioethics that way? If we have a treatment which we are not sure will work on a child, we can't use it for an experiment, but if we can't do the experiment, we'll never know if it works or be able to develop a version that does.

I can accept that if this particular experiment is very cavalier about risk, it should be dropped- but where's the line? How do we adapt adult treatments to children when things are uncertain? What do we do if there's some useful treatment that can be given to children but just won't work on adults, for some reason? Is that treatment forever barred from development unless it's a matter of desperate, absolute life-or-death need?

Ask the same question, get the same answer:

Also, I don't understand how it's just "shuffling the problem around" to test procedures like this on more severe medical conditions. Deafness is not a death sentence, nor is it completely debilitating. Find conditions whose effects are worse than the potential risks associated with umbilical stem cell treatment's worst case and test on those conditions for safety.

[Cesario]

Way to build your own strawman and set it on fire. It is simply not the parent's choice to make.

If you want to say you're not bowing to the will of the Flying Spagetti Monster, then give me an explaination that doesn't rely on "you can't change someone from the state the Flying Spagetti Monster put them in". Choosing not to treat a condition is every bit as much a choice you're making for someone as choosing to cripple them yourself.

Not everything NEEDS to be treated. There is a point at which further treatment carries more risk than halting treatment. Some things really come down to a choice between alternatives. Hence, the ancient medical dictum "First, do no harm."

There is no question that a competent adult has a right to refuse treatment even if that can lead to death. The problem is we are talking about children too young to be either competent or consenting

There is always a ballance that needs to be accounted for between the potential benefit and the potential risk. To the extent that it is possible, the choice ought to be delayed to the point that the person who's going to be dealing with the consequences can make the choice themselves. When that is not possible, the deision needs to be weighed on their behalf.

Defaulting to no treatment because that's the hand they were dealt is morally abhorent. Choosing no treatment for the sake of preserving someone's idea of their culture is despicable and a clear demonstration that you aren't acting in the child's interests. Choosing no treatment because the risks outweigh the potential benefit is a reasonable, sane thing to do.

In this case, there are plenty of adaptive technologies and other such mechanisms that will lead to an otherwise normal deaf child leading a happy productive and full life, with no adverse consequences other than intangible things they wont miss like certain perceptions of mozart

So instead of the parent deciding what is and isn't important in place of the child, it's you who gets to decide what is and isn't important in place of the child?

Parent do not automatically know what's best for their child. This is particuarly true of children with disabilities. Parents can become educated, but they don't start out that way and they aren't doctors/therapists/etc. Ideally, parents will ally with trained experts and everyone will make rational, unemotional decisions. That's not the real world, however. Parents sometimes make decisions based on fear and ignorance, and in the case of a child that can result in real harm.

It's not that Alyrium gets to decide, the point is that parents are not always the best decision makers and sometimes experts - which might well include adults who live with a particular disability - should make the decisions instead of parents.

There is NOT an easy, one-time answer for these situations. They need to be decided on a case-by-case basis.

Parents do not automatically know what is best, I agree completely. But by declaring what is and is not important, Alyrium is putting himself in the position of being the arbiter of what is and is not of value. In that sense, he is no better than the parents he doesn't think are worthy to make the decision.

The right answer is to let the patient make the decision. Because this situation makes the only right answer impossible, we're left contemplating and weighing the various less right ways of making a decision that needs to be made.

2) You can take a gigantic risk. A cochlear implant may or may not work at all, it may partially work. In the time it takes to figure that out, the window for language development may have closed,

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

The mechanism is not the CI itself but attitudes of those around the child. In the past, some people (not all) had the idea that a child with a CI should be prevented from using Sign to force them to rely more on the implant. If the CI wasn't working out so well, though, that could really fuck up the kid.

The fact is, a kid with a working CI doesn't need to be encouraged to use it, any more than a hearing kid needs to be encourage to use his or her organic ears. If the input is usable and useful it will be used.

The most important thing for a young child who is hearing impaired is that the language center of the brain is properly developed. That is absolutely essential to the future ability to function, and will have a large impact on future happiness. HOW that is done, whether through audible speech or Sign or a combination, is not so important as that it IS done. The problem is, old attitudes about the inferiority of Sign still exist. Fear still exist. Misunderstandings and ignorance still exist. Really, there is no downside to any child being taught Sign as well as a verbal language. Both stimulate the brain's language center. Yet there are still people who would deny Sign to deaf children. It's tragic.

I agree, that is tragic.

But this brings up the other side of that "you've only got a limited window of brain development" coin. If the child doesn't hear before that window closes, they won't be able to process sound since those brain structures will be repurposed and pruned away just like those language centers. We want to make sure they have the chance to learn language. I see no reason we should not also want to make sure they have the chance to process sound by the same reasoning. The risks may be radically different, but the fundamental principle of what we're trying to do is precisely the same.

and the kid will be at an increased risk for potentially lethal infections.

You'd be amazed at the number of potentially lethal things we allow parents to inflict on their children. We let them drive around in a car with those unconsenting children, for example. And those car rides are a lot more trivial a thing than the ability to hear.

Parents are required to install protective equipment in their vehicles when transporting their children to increase their safety. The odds of any particular trip resulting in an accident is low, and the child gets benefit through things like being taken to school for an education, or to relatives homes for social stimulation, and so forth. Thus, it is seems as an acceptable risk.

Point is, there is a trade-off, and it is a decision. This gets overlooked a lot when people start hysterically screatching about how no one has any right to subject a child to risks.

The absolute best parents are always subjecting their children to risks because they deem those risks acceptable for the potential quality of life improvements those risks come with. Take the kid on a car ride, you risk dying in a crash but gain education, social stimulation, etc. Give the kid a book and you risk papercuts but gain practice with written language, mental enrichment and entertainment. Let the kid ride a bike you risk injury from a crash, but you gain the benefits of exercise increased mobility, fun.

Risk isn't an absolute that you can eliminate from the parenting process. I agree completely that there are a lot of risks that aren't worth taking for the benefit that's on offer, but I take serious issue with the idea that any risk is unacceptable and there can be no cost-benefit analysis done.

Surgery is not trivial. When CI's were new and experimental implanting them in children was highly controversial, and no doubt many children who today would have qualified for one did not get one, and now as adults would not find them particularly useful. So long as those children were allowed to use Sign and benefited from a proper education the harm of denying them those early implants (which were more problematic than the current ones) was minor and they have a good chance of leading meaningful, full, and happy lives. Thanks to pioneering adults who adopted CI's, allowing surgeons and engineers to refine the devices and procedures, the risk of implanting one these days is relatively low and thus it is now acceptable to perform this on non-consenting children. We have a good idea of the risk/benefit ratio, the newer implantations have less risk of subsequent infections, all children (and adults) with CI's should get meningitis vaccines, and the risk continues to fall even while the technology improves.

With stem cell therapy, we don't know the exact risks. We DO know that stem cell trials in adults have resulted in the wrong structures forming, unwanted structures forming, sudden deaths where we don't always know the mechanism, and often nothing at all. This makes such experimentation problematic even in adults, much less children. If the disorder being treated was a matter of life or death that might make it justifiable but deafness is no such thing. There are so many other options, even for the most deaf of individuals, that I don't see where such a risk is acceptable in infants, which is really what we're talking about here.

3) You can take an even bigger risk like this clinical trial, where the kid is likely to develop malignant tumors, and the treatment is very unlikely to have any theraputic benefit.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

Based on other clinical trials using stem cell therapy, most of the time it just doesn't work. It can be very difficult just to get the stem cells into the proper location, and then you have to somehow signal them to start a development process, guide it, and then tell them to stop growing when appropriate. This is a very complex task we don't fully understand. Again, based on other clinical trials, participants have developed tumors (in some cases fatal), unexpected side effects (some of them leading to suicide), and just up and died for reasons that the researchers just weren't sure about. So the exact risks are unknown, but probably risks can be pretty damn ugly.

Personally, I feel we should get a much better grip on stem cell use in general, either in the lab or in consenting adults, before trying this on kids. And when we do try it on kids, we should start with life-or-death problems and not problems like deafness for which accommodations exist that allow a high quality of life without the risk of experimentation of this sort.

And you can argue that the risk isn't worth the potential benefit. I'm even inclined to agree with you on that point. But I take serious issue with denying that there is any potential benefit to be had.

Keep in mind, too, that a kid with a CI implanted and a developed language center in the brain should, in theory, be able to utilize stem cells later to regrow a damaged organic structure. Using a CI should keep the window open to use a fully developed stem cell technology later down the line, or to consent to experimentation as an adult.

Are you aware why the experiment is specifically targeting infants? I was under the impression that there were factors the researchers were looking at that were unique to children this young that would make research on adults inapplicable to this population or vice-versa. Was I mistaken about this?

Do you have the right to make that choice for someone else? Fuck No.

So who does? Again, are we back to bowing to the will of God rather than trying to do what we can to keep the child's options as open as we can until they can make their own choices?

That IS the big question in medical ethics. These days, it's often a committee that includes not only medical and technological experts but more and more frequently an adult who has the disability in question. Hell, back when I worked with medical researchers we often included lay people with the studied disease or disorder in the review process to get their input, as they were the sort of people who would have to live with the research results.

The really funny one was the research project we did concerning cochlear implants where the project lead was a deaf woman. Angry people would call her on the phone and scream at her that she just didn't understand deafness and their kids would never be able to function without X, Y, or Z. Of course, she couldn't hear them, so she had an interpreter relay the information to her in Sign. She replied to them using her own voice, though (she could also speak and lip-read Italian- have I mentioned that a LOT of deaf people are poly-lingual?) and often it wasn't until they met her in person they realize that she, like their children was deaf. As it happens, she was the woman I mentioned who was deaf due to brain damage and thus could not benefit from a CI. Somehow it just doesn't occur to them that a deaf person could also have a doctorate and be a scientific researcher. Despite being totally deaf.

So... when contemplating surgery on a child too young to consent, the usual practice is to assemble a group of people including parents, doctors, rehabilitation experts, and so on. It is also quite common to bring in parents of children with such disabilities or illnesses, and adults who have been such children, to discuss how living with such problems actually is. My own spouse has on occasion been part of this sort of thing. A co-worker of my father had a child with spina bifida and was panicking over worst-case scenarios and so forth, then my spouse and I show up and hey, yeah, there are real downsides to the birth defect but he obviously grew up, he's functional, he's smart, he got married, and has a pretty normal life so it's not hopeless.

When you're dealing with someone who can't give consent the current strategy is to get many viewpoints and try to reach a consensus in the person's best interest.

Seems like a reasonable strategy.

This is a life-changing choice that can only be ethically made by the person affected. Particularly when the risks are this large. A kid cannot consent to the risks, and should not have those risks foisted on them.

How do you feel about vaccination?

Vaccination has been around a long time and the risks are pretty well known. High risk groups can be identified and excused from vaccination. We have experience in managing negative outcomes. As a result, it skews the risk/benefit ratio to the point where the disease-protection benefit in appropriately chosen people way outweighs the potential risk, and on the rare occasion something does go wrong we have some clue what to do to treat the side effect.

This is markedly different from stem cell technology where we can't even get it work at all most of the time, we don't know what makes someone more or less likely to suffer negative outcomes, and when we they do happen we often don't have a real clue what to do and the doctors are left guessing at what should be done.

You really don't see a difference there?

There is a difference in degree, but not in kind. I specifically brought up vaccinations because they're a proven technology that is generally considered to be worth the risks. But it's also one where there is a real cost-benefit analysis that needs to be done even now. I brought it up because I want to make sure that cost-benefit ratio is being weighed here, and not just discarded in the face of a treatment for a problem Alyrium doesn't think needs to be treated at all, ever.

Not unless the theraputic benefit is absolutely huge as in conditions that lead a child to be immobile, or in constant pain, or dead before the age of five.

Why are those exceptions?

Don't be deliberately stupid.

What I'm looking for here is the underlying moral principle. I have my own reasons those clearly ought to be done, but my reasons for that would also apply to situations like CIs, vaccinations, and magic-regrow-your-legs treatments. Alyrium's reasons obviously don't apply to those other situations, so I want to know how he's making the distinction that he's clearly making here.

If you want to say you're not bowing to the will of the Flying Spagetti Monster, then give me an explaination that doesn't rely on "you can't change someone from the state the Flying Spagetti Monster put them in". Choosing not to treat a condition is every bit as much a choice you're making for someone as choosing to cripple them yourself. The only way that becomes meaningfully different is if you're going to invoke God as the next best choice of who gets to make the decisions when the patient hasn't got the option.

How to put it... it is something other than choice. I dont think parents have the right to make choices for their children who cannot consent. They have an absolute duty to do what is in the best interest of their child, within their means. That means that in the case where the child cannot consent, they have an absolute duty to maximize the chance of that child's future happiness, which necessarily entails not taking unnecessary risks. In some cases, yes, that can mean dealing with the hand the universe deals you in cases of deafness and certain other conditions, because the cure may well be worse than the disease. In other cases, it means fighting the universe tooth and nail. These are obligations. Prima facia duties. Not choices.

You don't understand what the word "choice" means. How do you determine whether you're looking at a "cure may be worse than the disease" or when you need to "fight the universe tooth and nail"? You look at the evidence and you make a CHOICE. Sometimes you make the wrong one, because you aren't a perfect being. Sometimes you make the wrong choice because you're ignorant. Sometimes you make the wrong choice because you're a malevolent piece of shit who has no business being responsible for another human being.

But there is a choice and it has to be made. To pretend that there is no choice is to abandon your responsiblity. Because when you choose to do nothing, that's still a choice.

So instead of the parent deciding what is and isn't important in place of the child, it's you who gets to decide what is and isn't important in place of the child?

No. It is an objective risk/benefit calculation. Ideally, a parent would be a dispassionate guardian of their children. But they are not, often. They have certain expectations regarding their children that will color their judgement. More on how this can, has, and still does play out momentarily.

No. There is nothing objective about you presenting your personal values as a moral absolute. You don't value the sense of sound, but your lack of value for it is not a universal thing. A lot of people, even in just this thread, have noted that the sense of sound is something that they value, so all you've got is your own opinion, which is no more objective than theirs is.

Is there something about CIs that prevent someone from learning Sign Language while the CI is present? I can't think of a mechanism which would prevent this, since I have it on good authority that people who can hear are apparently able to learn Sign Language.

Hearing parents of deaf children often have... unrealistic expectations of what a CI can do for their child. So they will rationalize not learning or teaching sign language on the basis of "they have a CI, they can hear just fine" they have no ability to judge for themselves what their child actually can hear. You end up with situations where parents, seeing that their child can respond to sound (but cannot actually differentiate between words), talk to their child and do not use sign language. By the time they notice something is wrong, the language window closes. It also takes a while to become fluent in a language, and a parent simply may not be able to learn it well enough in the time they have to be effective if the window has not closed by the time they realize their is still functionally deaf.

A CI for someone who loses hearing as an adult or even older child can be a really good thing. However, for infants... the fallibility of a parent--especially one who is desperate for their child to be normal--is a rather large risk, and one counter-indicating CIs in infants.

So the device won't interfear at all with the aquisition of sign language. That's what I thought. Which means you've been presenting a false-choice. That's what I thought.

Honest and good people can and do disagree here,

This sentence is not at all consistent with your earlier statement about the sense of sound being objectively without value.

so calling a group of people with cultural experience seeing the wages of idiot parents, objecting to policy level use of CIs or child experimentation despicable is out of place and wrong-headed.

The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment in order to force them into a culture. The people I'm calling despicable are the ones who are arguing that children should not recieve medical treatment because they personally don't value the capability that the treatment seeks to preserve or restore. The people I'm calling despicable are the ones who would cowardly deny that there is even a choice to be made in order to try to force other people into treating their personal prejudices as objective fact.

The people who have legitimate concerns about the cost-benefit ratio of particular treatments, I've got no issue with.

This is why the choice should not be up to the parent. Instead, it should be up to an ethical review panel, that attaches conditions to the use of a childhood CI, and follows up. If the parent is fucking up and the child is in danger of never learning a language, then someone needs to step in for the benefit of that child. As it stands, the system is set up to give a parent who has no idea what the fuck they are doing ultimate power to make or break a child, and that is not acceptable.

We don't disagree here.

Experimentation in the way described in the OP really is a manifestly bad idea, and should only be permitted in cases where the condition being treated is life threatening or disabling to the point of guaranteed reduced quality of life. Deafness does not qualify.

Deafness is guaranteed reduced quality of life, just like amputation of the left arm and blindness. That's where the problem comes in. You think that deafness never needs to be treated anyway, so any medical exploration around that area will never be worth it in your mind, because any risks that come with the treatment will be weighed against nothing because you don't value the goal of the procedure.

While this is interesting, why is it part of your argument?

The ratio between risk and theraputic benefit.

No, you view the theraputic benefits as nonexistent even with perfect success, so you aren't qualified to weigh anything.

Where are you getting your "likely" and "unlikely" when the descriptions reffer to "unknown"?

Because I know how this shit works, and keep up with the literature. Stem cell trials have a tendency to go... poorly. It is very very hard to get stem cells into the right place and get them to do what you want them to do when you just inject them into a cavity like the inside of a damaged cochlea. It would be one thing if they were growing these things in vitro other otherwise ex situ and implanting them. They are not. They are hoping to throw them in situ without the necessary developmental signals, and that is a recipe for, at best, no effect, and at worse malignant tumors and systemic immune rejection. The majority of the confidence interval is in the range of "Fucked"

And now you're outright lying. If the best case scenario is "no effect", then there is no point in performing the experiment at all. No one would fund it. No researcher would be interested in performing the study. No regulatory body would approve the experiment.

This is why I don't treat your views as valid. You aren't performing a cost-benefit analysis. You're using the terminology in order to pretend you're doing something other than presenting your own baseless opinions as moral absolutes.

Now, with another poster, the cost-benefit analysis could be weighed, and it seems entirely likely I'd end up agreeing that this case isn't one of those ones that's worth it, but in the face of your gleeful deception and moral cowardice, that debate isn't going to happen between us.

How do you feel about vaccination?

The risks of vaccination are low, the benefit of not dying from polio or other child-killing diseases high. Failure to vaccinate puts other children in danger. In my view, no parent should have the right to refuse vaccination on any grounds other than medical concerns such as immunosuppressive conditions.

Again, parents do not have rights over their children. They have duties and responsibilities. Sometimes those duties prohibit harmful treatments, in other cases they mandate necessary treatments, irrespective of the beliefs or predispositions of the parents.

In the case of religion... Well if the child of a JW needs a blood transfusion... God will understand. If he does not, then he is not God.

This pretty much confirms that introspection is beyond you. You seem capable of weighing multiple risk factors in vaccination, but apparently when we're talking about a quality of life issue like the loss of a sense, there's no decision to be made.

Why are those exceptions?

Dont be deliberately stupid.

If you aren't going to bother to so much as write your own one-liners, I see no reason to believe you'd bother to look up and see the response I already gave to this "cute" come-back.

So you agree with me in principle but feel this particular procedure is more risky than is reasonable?

Yes and no.

That's not how it works.

I happen to think deafness is only a disability by technicality and social context. It does not by itself harm the deaf person's ability to enjoy life. Quality of life and the hedonic value of future choices are what matter. If the treatment for deafness or any condition has a serious potential to be worse than what is being treated, then it should not be foisted on someone who cannot make the choice themselves.

And since you think that there is absolutely no meaningful benefit to being able to hear, you would not accept the treatment as an acceptable thing to provide even if it had all the risks of getting a papercut from reading a baby book to your child.

If I lose my leg as an adult and decide I want to risk my long term health in experimental leg regeneration experiments, that is my prerogative. If it happens as a child, my parents have no right to risk my long term health when a prosthetic would give me the best chance at a happy life. If that takes a government or hospital ethics panel stepping in and telling them to fuck off, so be it.

You don't seem to grasp that intelligent, moral people can disagree about what the best chance for a happy life is. In spite of you mindlessly parroting that line to me above.