One of those ethical subjects that I can't make my mind up on.

[thehod]

From BBC news


Treatment keeps girl child-sized

Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.

Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed.

They say the treatment will help to improve her quality of life.

Ashley's parents, Seattle residents who have not given their names, went public over their daughter's treatment in a blog launched on 1 January.

Their decision came after information about Ashley's case was published in a US medical journal last year, triggering considerable debate and criticism.

Ashley's parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities - movement that will benefit her physical and mental well-being.

Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".

"If she were smaller it would be much easier for them to continue to provide a much more personal level of care," he said.

"Dad is frequently the one that lifts her from one place to the other, so if she gets bigger that becomes much more difficult, as they get older it becomes more difficult. At that point in time they would be forced to consider using a mechanical lift, which is much more impersonal."

Ashley's parents wrote on the site: "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver.

Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her "Pillow Angel", because she does not move from wherever they put her, usually on a pillow.

The couple decided three years ago to take steps to minimise their daughter's adult height and weight.

In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.

Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.

"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.

The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.

The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.

The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.

"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.

"The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

On one hand the willful mutilation of this child makes me very uncomfortable, however, having said that, I can fully understand why the parents have done this and agree that Ashley will have a better life because of it. I cannot say with any certainty that in their place I would not have done the same thing.

I think the only thing that can be said is "There but for the grace of God."

[Solaris]

My main concern is, "What if the diagnosis is wrong, or what if someone invents a way to give her better brain/maturity capacity, sometime during her life?" It's not like they can put all that back.

On the other hand, I can also understand their fears of molestion/pregnancy, and her having to deal with cycle hormones, and very likely, "How are we going to cope with caring for her when we're old and feeble?" However, many other parents have coped with such issues before, though I'm sure for some elderly it includes hiring a fulltime nurse for her.

I understand that they love her, and they believe they did what is in her best interest... but I have a lot of reservations about it, and personally think that maybe they made the wrong choice. I don't know all about the situation, but my gut feels very uneasy with this. I'm not condemning them, and I know it's a tough choice, and a personal one... but this makes me feel very uneasy.

[Alan Lynch]

Yeah, it's a tough one, but I think I'm against it. On the whole. I can totally understand why the parents did it, and I wouldn't dream of condemning them as strongly as some have, but I think I'd have left her as she was. There's a line that's been crossed which I'd prefer not to.

Again though, personal choice, spoken from a comfortable position. God knows what I'd do in their position.

[Huh?]

I don't really agree with the parents. Like Solaris said, what happens if treatment comes around that gives her a shot at a "normal" life? This girl, might be pretty pissed that someone did this to her body.

Also, I don't understand why they are even concerned with pregnancy and sexual abuse. Are they going to put her on a bus across the country all by herself? No. The only people that are likely to abuse her are her family members. Do they think that is possible?

But really, my biggest problem is that, despite what they are saying, it seems to me that all of this really is for the caregiver's benefit, not the patient.

[TinMan]

Well, let's take a look at what her condition really is:

http://en.wikipedia.org/wiki/Encephalopathy

It seems that all variations of this condition are in all actuallity, brain damage, just to different degrees with different causes. Now if that damage took place when she was an infant (as it is implied in this article), then I don't see how they could ever "fix" that so well she could ever function as a mature adult. So any uneasiness you guys may feel because of a possibility of a "cure" or "fix" can probably be dispelled, the girl has an extreme case that was brought on during infancy... even if they could fix it down the line in a mature victim, her brain would have already formed her permanent synapses, so it wouldn't really do much to help.

As for what the parents chose to do: I refuse to condemn or judge them. I've never had a child in that situation so I don't know how I would react or feel about such a thing, nor do I know how I would handle her medical condition and the options I would have open. That's more of an "I'll cross that bridge if/when I come to it" situation for me.

[BlairH]

It's a tricky one. Medical science is doing things right now that were thought impossible only a decade ago, so I wouldn't discount the possibility of a "cure" (partial or otherwise) for her condition.

Keeping that in mind, such mutilation of a human strikes me as coming too close to eugenics for my liking. That said, I honestly don't know what I'd do if I were in the same situation as the parents. Like I said, it's a tricky one. I would however say that such...modification of the human body should NOT be avaliable for free on our NHS.

[BoosterBronze]

Damn.

This issue completely boggles my mind.

I find myself unable to provide an opinion, analysis, or even a pithy comment.

I have no idea what to say, except that modern medicine is an amazing and frightening thing.

[Michael P]

Well, it creeps the fuck out of me.

Edit: Also, I can't help thinking of the "Baby Dahl" episode of Batman.

[Jeff Brady]

Edit: Also, I can't help thinking of the "Baby Dahl" episode of Batman.

The one where she hooks up with Crock is especially creepy.

[darkkeeperjr]

on the surface it seems like a good idea,cause she's always going to be treated and cared for like a baby anyway.also if the parents for some reason can't keep up the level of care then doctors will make sure she gets the best care just so they can keep up with her progress.

Seems like she will be a case study and may be one day it will be the normal thing to do.

[Alan Lynch]

Seems like she will be a case study and may be one day it will be the normal thing to do.
I'd hate to think that this might become the norm someday; surely more effort should go into treatment or cures for conditions which put the parents in this position? While nobody can really comment on this particular case, I think on the whole that tailoring a patient's body depending on their illness is a bad thing. It'd have to be something exceptional like this before I could reach that point.

[thehod]

God, these ethical dilemas are coming thick and fast at the moment, aren't they...

Again, from BBC News (http://news.bbc.co.uk/1/hi/health/6230945.stm)


Hybrid embryo work 'under threat'

UK scientists planning to mix human and animal cells in order to research cures for degenerative diseases fear their work will be halted.
They accuse the body that grants licences for embryo research, the HFEA, of bowing to government pressure if it fails to consider their applications.

Ministers proposed outlawing such work after unfavourable public opinion.

The Human Fertilisation and Embryology Authority is to discuss if two research requests come under its remit.

The creation of hybrid human-animal embryos was first suggested as a way of addressing the shortage of human eggs available for research.

But the HFEA says it is unresolved whether this type of controversial work is permissible under existing laws - or even whether it falls under the HFEA's jurisdiction to grant a licence.

The resulting embryos made are more than 99% human, with a small animal component.

Opponents say this is tampering with nature and is unethical.

The researchers have called for greater understanding of what they are trying to achieve.

The public was consulted on hybrid embryo work among other issues for an overhaul of outdated laws on fertility treatments and embryo research.

Ministers felt the Human Fertilisation and Embryology Act 1990 needed to be updated as science has moved on significantly.

The new white paper says scientists will be able to push forward research in some areas, such as altering the genetic structure of cells that make embryos.

But government proposes prohibiting them from making human-animal hybrids or so-called "chimeras" - where genetic material is taken from humans and put it into a host animal egg.

That is then allowed to grow to a very early embryo stage in the lab as a source of stem cells for research.

Scientists are hopeful that studies on stem cells - immature cells that can become many types of tissue - could lead to greater understanding and even a cure for many diseases, including Alzheimer's.

They say using human-animal mixes rather than human eggs to get the stem cells makes sense because human eggs are in short supply, plus the process is less cumbersome and yields better results.

Professor Chris Shaw from Kings College London, along with his colleague Dr Stephen Minger, has applied for a licence for stem cell work on Motor Neurone Disease.

He said: "To shut this down at the moment is a real affront to patients. We do not have a single drug that makes a difference to the disease course."

Dr Minger, who hopes to look at the genetic causes of conditions like Parkinson's disease, said he had been told that the HFEA was unlikely to grant his application.

A second team of scientists, led by Professor Lyle Armstrong at Newcastle University, has applied to research how different tissues grow in the body.

Dr Evan Harris MP, Liberal Democrat member of the Science and Technology Select Committee, warned there would be fierce opposition from scientists and parliamentarians to any draft bill which included such a ban.

An HFEA spokesman said: "We need to decide whether the law prohibits this research, whether it falls under our remit at all, and then we can look at whether we have a fundamental view on this type of research.

"We have a duty to consider any application put before us."

If the HFEA decides it is outside its remit, the scientists will not legally need a licence to continue with their work.

A spokesman for the Department of Health stressed that the new law, which still needs to be debated in Parliament, would contain a clause allowing for the possibility that this type of work should be permitted in the future.

Josephine Quintavalle, of CORE ethics, said: "This is creating an animal-human hybrid and that has to be acknowledged as something that does not meet with approval.

"We hope that the HFEA has found this is one hurdle too many and they are not prepared to jump over it."

Whilst I can see the benefits of this research and wholly support what these people are doing, I do feel that the areas that their research is going into has massive potential dangers, especially in regards to human/animal hybrids.

At the moment we may be just talking a bout a cluster of cells, but other, less scrupuless people could use this research to create all sorts of things.

Where you draw the line is a damn tricky issue.

[Paul McEnery]

Ah, waiting for that.

One thing is creating possibilities for life.

The other thing is clinging to life that can never come to fruition.

How much fucking money was spent on this child who is already a lost case, compared to what you could do with that money in the developing world to save any number of children who just need a square meal.

It's not like I don't have sympathy for these parents -- though by God, I'm not going to waste in on the child -- it's that I'm disgusted by any... ANY... fucking doctor who is cutting the tits off a functionally dead child when they could be saving a thousand children with the same talents and money.

Christ.

[venuscameback]

I would however say that such...modification of the human body should NOT be avaliable for free on our NHS.

So only rich people should be able to receive the benefits of such procedures? If people think this does benefit the child, why should only the children of wealthier families get the surgery?

[venuscameback]

Also, I don't understand why they are even concerned with pregnancy and sexual abuse. Are they going to put her on a bus across the country all by herself? No. The only people that are likely to abuse her are her family members. Do they think that is possible?

Horrific numbers of disabled children suffer from sexual abuse at some point. The vast majority of child sex abuse is perpetrated by someone already known to the victim and trusted by them, such as a family member or close family friend. With that in mind, the parents are right to be mindful of what could happen to their daughter.

There are other risks to bear in mind, too - their daughter may receive respite care from time to time, in order to give the parents a break. They will probably know very little about who she's staying with, unless it's privately organised with a friend or family member caring for her.

I'm not sure this is the best or right course of action, but the risk is very real.


despite what they are saying, it seems to me that all of this really is for the caregiver's benefit, not the patient.

I agree

[Alan Lynch]

The abuse reason given for some of this stuff is the only thing I find a little fuzzy; removing her breasts and keeping her tiny won't suddenly make her immune to the danger. It felt a little like clutching at straws.

As for animal/human hybrids...To a point, I'm alright with it. As long as it's only ever used for research purposes being discussed currently, that's OK. But a line has to be drawn quickly, before someone does get curious and decides to see how far they can actually take it.

[Mikado]

im torn like the original poster of this thread