Medically Engineered Humans

[Flynn]

The "Ashley Treatment"

The parents of a severely disabled young girl ( Ashley ) have turned to the internet to defend their decision to approve growth-stunting medical treatments that will ensure that she has a child’s body for the rest of her life.

The procedures include large doses of estrogen that will restrict bone growth, a hysterectomy and the removal of breast buds so she will not develop breasts as an adult.

Ashley’s parents reject accusations that the purpose of the procedures was to make their lives more convenient. The parents say it is a misconception that the treatment is intended for the care giver rather than what they say are actions that will improve Ashley’s quality of life.

It goes without saying that an adult in a child’s body would be much easier to care for than that of a fully grown adult.

I don’t doubt for one moment that these parents are acting in what they believe are in the best interests of their daughter.

Do parents have the right to have those sorts of medical treatments carried out on their children ?

Where is the blurring of the lines in other childhood disorders where a parent or a guardian can ask for a procedures such as sterilisation be carried out ?

Whose responsibility is it to ascertain which children can have radical medical treatments ?

[kiki5711]

THat is very interesting. In some way I really understand their point of view and feel their suffering.

Severely disabled adults are not easy to take care of. Even if they can do physical task such as go to the bathroom and eat by themselves, taking care of them for the rest of their life is just plain cruel. It's hard. They are big and act like a child, you have to watch them like a two year old and take care of them every minute of the day even though they look 40 yrs old.

For a reason like this, I could understnd why these parents would do that and feel very sorry for what they have to go through.

[brilor]

What has happened here is morally wrong. This is to make the parents life easier not the child.
This is exactly what Dr Mengele was doing to young Jewish boys and girls in the concentration camps during WW2.

To the surgeons who carried out this horrible proceedure keep up the good work, Dr Mengele will be cheering you on from hell!

[kiki5711]

What has happened here is morally wrong. This is to make the parents life easier not the child.
This is exactly what Dr Mengele was doing to young Jewish boys and girls in the concentration camps during WW2.

To the surgeons who carried out this horrible proceedure keep up the good work, Dr Mengele will be cheering you on from hell!

brilor, but that's not the same though.
I feel they are doing it to make her life easier, and yes theirs too.
But I do wonder how does this affect her mental development though???? Did it say in that article, I didn't read it all.

[AutumnRain]

its a very very tough topic.
One the one hand as a parent you do whatever you can to make sure your child has the best care in the world. however at the same time looking after a child with several disabilities is a very hard and tiring thing to do.

we cannot speak for these parents we can only try and understand the pressures that they feel. personally I wouldnt want to mutalate my child, I would let nature take its course, let her grow, let her develop, she may not be able to do much if anything for herself but she is still a person and life is precious, dont mess with it..

[brilor]

Brilor, that is a bit extreme view to bracket them with Nazis and medical experiments. No one deserves that. least of all those who are probably debating the wisdom of the difficult choice they made.
This is one reason I wish the thread was not on a specific case but was crafted on a hypothetical episode where no one gets vilified and just the ethics are argued keeping it impersonal with regard to both subjects and debaters. Helps to keep it rational and less emotional / sentimental.

I don't think that my view is extreme. What is extreme is what has happened!

[AutumnRain]

hmm.. brilor, you cant compare the two at all.. what mengele did was pure torture for the sake of his own research.
I think from these parents point of view, if it is easier for them to look after a disabled child then it will be less hassle for hte child... in the long run..
I dont agree with what they are doing, but I can understand..

[Vinnie]

Also Mengele's "research" was poorly planned torture. The Nazi's did conduct some "useful" experiments but not under Dr Mengele. (An interesting quandry for the victors was how to deal with the research the Nazi's gained into the effects of decompression on the human body - vital for high altitude flyers. Unfortunately they'd done the research by locking people into chambers and sucking the air out. Could the Allies in good concience use it or had the poor people died for nothing - but we are getting off topic here.)
A parent has the right to make certain decisions which are in the childs best interest. How far can this right extend is a difficult question.
I do not belive that it is a right that is absolute.
he interests of the child are paramount in all cases and the courts should be willing to step in to arbitrate the descisions.
I do not understand the choice tha parents made in this instance but I can understand where they are coming from. I do ot think it was the correct choce although I can see the advantages that will accrue to the child.

[Flynn]

Comparing the parents actions to Dr Mengele is extreme but I agree with Brilor, this treatment has more to do with the parents well being than the childs.

What is the next step along this path do we permit parents to medically induce a coma to make it easier for them ?

[sexysadie]

While visiting this thread earlier, I felt torn between the rights of the child and the pain of watching that child suffer from the eyes of a parent. I then decided to read the "Ashley" case myself and I must say...I'm still quite torn. Although my heart goes out to any parent in that situation or anything even remotely similar, I can't help but wonder if the childs right to, not only grow as a human being but as a woman as well..has been compromised here. Who should get to make that final decision as to what Ashley's "quality of life" should be? She's not a vegetable by no means...Ashley can see, hear, think, move, love...and she has quite the taste in music I might add. Ashley's parents? What can I say...may God bless them......there's not a doubt in my mind that they have their daughters best interest in mind and heart...I don't think anybody can argue with that. My fear is that...if something like this is acceptable...what's next?

[sexysadie]

Acceptability is a very amorphous concept these days and we cannot crystallize hardened opinions on any subject.
When people can't agree on what is acceptable in proven facts, how much more difficult it will be in constantly evolving and developing fields which are advancing a too rapid a pace for morals to cope and ethics to keep pace with.
Such a huge grey area in the middle of the road and no black and white shoulders to take a firm stand on as the goal post keeps shifting and what was a shoulder before is suddenly part of the expanding road.
We are constantly overtaken by progress and by the time we make up our mind on something, the paradigm shifts.

If you put yourself in Ashley's place and gave yourself a degree of control in decision, would you agree to stalling growth to be less of a burden to your care-givers? Or would you want them to struggle lugging your immobile weight around, or suffer bed-sores and even worse, if you begin to suffer neglect as you become too cumbersome to handle more frequently.
You are being physically Bonsai'd but your metal faculties are not being tampered with and she will not miss growing something she has not and cannot use. Remember, as they grow older, their physical strength will ebb as her handling weight would increase.
Will the critics of this treatment, be at hand to lend a hand to the aging parents who will be unable to even roll over their heavy child, to stop a sore forming, let alone bathe and clean her of her daily bodily functions.
Now provided with an option to optimize her care, I would still vote for the parents' choice in this regard.

If I was to put myself in Ashley's place, I don't think I'd want to live (period)..would that be all right too? I'm not arguing sides here CB...I agree with you on all points...but I also disagree...this is a fragile subject and unless you know first hand how it feels to be in Ashley's shoes or her parents...it's just much too difficult to understand. My heart goes out to this family, they've made a decision and it's one they'll have to live with for the rest of their lives.

[MichaelArchangel]

“The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive and mental developmental ability since about three months of age.”

“Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.”

The neurological system was thought to mature as a child, whereas now it is understood it doesn’t reach full potential until very late teens early 20’s (21-23 year of age.)

I have worked with 10 – 60 year old severely disabled people and each one an individual no matter if they share a common diagnosis. In this case we don’t have a diagnosis but a ‘condition’ that mystifies all involved.

The dilemma I see is should Ashley continue to further develop neurologically as she is physically, will she then be in such mental anguish to have been stunted physically while possessing the facilities of an adult.

Now we have the shoe on the other foot, so-to-speak. Will her quality of life be better for her then or will she be in such mental anguish she will wish with her every waking moment for death and live a ripe old age with no control, adult rights, responsibilities and freedoms?

A huge dilemma for all concerned, indeed!

Remember a girl named Helen was thought to be severely retarded, but she was just deaf and dumb! Problem was no one understood her condition until...

Best wishes for Ashley!

Mich

[MichaelArchangel]

Acceptability is a very amorphous concept these days and we cannot crystallize hardened opinions on any subject.

Oh first welcome aboard...*wink* Aboard the roo board...anyway...that having been said.

It is fluid opinions and mindsets that are more susceptible to change and hence agreement. The hardened crystallize mind sets are just that unchanging and seems to by far and large become more difficult for many to continue to learn and accept change as one ages...just ask me...I am getting old! *wink!*

"When people can't agree on what is acceptable in proven facts, how much more difficult it will be in constantly evolving and developing fields which are advancing a too rapid a pace for morals to cope and ethics to keep pace with.
Such a huge grey area in the middle of the road and no black and white shoulders to take a firm stand on as the goal post keeps shifting and what was a shoulder before is suddenly part of the expanding road.
We are constantly overtaken by progress and by the time we make up our mind on something, the paradigm shifts."

Man o man, you have said a 'mind' full here. Do we go with the scientific flow which seems to increase at a rate my father and grandfather could never fathom and say well tomorrow, tomorrow or hell in a few hours we just might have a new 'wrench' for that there 'issue?'

Whereas, I am in total agreement that the road is widening at such a rate we often know not where we travel, it can also be said the middle of the road is often best traveled and most ethical medically speaking!

Ahhh, the shifting paradigm argument, we can not truly predict the future, less we are all of the nostrodomous cut of cloth, so can we not be firm, yet flexible within our understanding at the moment in time which we all must live, I believe it is the only way we can make moral decision and slumber well.

"If you put yourself in Ashley's place and gave yourself a degree of control in decision, would you agree to stalling growth to be less of a burden to your care-givers? Or would you want them to struggle lugging your immobile weight around, or suffer bed-sores and even worse, if you begin to suffer neglect as you become too cumbersome to handle more frequently.
You are being physically Bonsai'd but your metal faculties are not being tampered with and she will not miss growing something she has not and cannot use. Remember, as they grow older, their physical strength will ebb as her handling weight would increase.
Will the critics of this treatment, be at hand to lend a hand to the aging parents who will be unable to even roll over their heavy child, to stop a sore forming, let alone bathe and clean her of her daily bodily functions.
Now provided with an option to optimize her care, I would still vote for the parents' choice in this regard."

As SS submitted, I would rather be dead then face a life burdening others given I had no hope of further development. However, since this 'condition' is an unknown entity for the scientific community I would hope someone would stand as champion for my dreams, desire, goals and aspirations as a young 'women.'

Will our society, here in the US as I believe that is the setting of this plight allow for the care of such a child? I would hope so, seems we face these medical issues daily now, thus the radical treatment of this little girl. We have a much better social safety net then your current place of residence. Furthermore, having been a care taker of my invalid father for over a decade I often grew tired and weary of the role reversal, but I never damned him for his need to have me wash his ass and move his larger than average adult body, he was a man and deserved such care, a time before that I had to depend on him and the cycle persists.

All that said, I don't have all the facts, but the parents home page was short on facts, brain waves, developmental milestones, etc...therefore I really can not make an informed call, however let me say what little they did disclose in this regard leaves much to be desired and will be the impetus for researching this case and I will get back with the board after I attempt to learn more.

Regards,

Mich

[Flynn]

Ashley has not developed physical and mental abilities past that of a three month old baby. She does not have the neurological abilty to lift her own head and medical opinion is that she will never achieve cognitive skills greater than what she has at present.

She is not in a vegetative state and as most three month old babies she experiences hunger, pain and I'm sure with the right stimulus like any three month old baby she would experience pleasure.

Qualified medical practioners assert that Ashley's neurological capacity will never be more than that of a three month old baby and they use that as a basis for the treatment that she has undergone.

I acknowledge that her parents truely do believe they are doing the right thing by their daughter and from what I have read about them they are appear to be have a financially stable future, in other words they can afford the treatment that their child is receiving.

What about the families who can't afford such treatments ?

I also take it as a given that Ashley's doctors are competant and caring people and would not have agreed to her treatment unless her condition is based in fact.

The reason I put this thread up was not to necessarily judge Ashley's parents but to assertain where this Brave New World of medical practicionary stops and or starts.

Brilor commented that the treatment is akin to what Dr Mengele was doing in the 1940's, a harsh comment but not far off the mark.

The Robin Cook novel " Coma ", in that fictional story patients had bolts screwed into their limbs, wires were attached and they were suspended from the ceiling to eliminate the need for intensive care nursing.

Is the fictional story " Coma " the next reality in medical technology for those that can afford the treatment ?

Truth is stranger than fiction and fiction has a habit of becoming fact.

In everything I have read about Ashley I am yet to read what if any government department gave approval for her treatment to take place.

[sybarite]

The "Ashley Treatment"

The parents of a severely disabled young girl ( Ashley ) have turned to the internet to defend their decision to approve growth-stunting medical treatments that will ensure that she has a child’s body for the rest of her life.

The procedures include large doses of estrogen that will restrict bone growth, a hysterectomy and the removal of breast buds so she will not develop breasts as an adult.

Ashley’s parents reject accusations that the purpose of the procedures was to make their lives more convenient. The parents say it is a misconception that the treatment is intended for the care giver rather than what they say are actions that will improve Ashley’s quality of life.

It goes without saying that an adult in a child’s body would be much easier to care for than that of a fully grown adult.

I don’t doubt for one moment that these parents are acting in what they believe are in the best interests of their daughter.

Do parents have the right to have those sorts of medical treatments carried out on their children ?

Where is the blurring of the lines in other childhood disorders where a parent or a guardian can ask for a procedures such as sterilisation be carried out ?

Whose responsibility is it to ascertain which children can have radical medical treatments ?

I find this very disturbing. Not to long ago stem cell research was unheard of. Say that by some miracle they found a "cure" for her neurological condition and you now have a fully functioning adult in a miniature body. I worked in a home for the mentally challenged for three years. They deserve the dignity of maturing in an adult body. Her chances right now of reversing her neurological condition are slim to none, however, science has produced "miracles" in the past and will continue to do so in the future. Let's not give up hope.

[jungleboy]

OK, how do I put this. I read the artical and all the posts.

IMHO, the parents can do anything they like. Who are we to dictate their family actions. Are we going to pay for and support them in their efforts. (I do wonder was the procedure free?)

I too have taken care of bed-ridden adults. It is a task! So the smaller body will help. Also she will not be getting pregnet (It could happen).

Things, information, new discoveries are constantly coming into play. So the decision can only be based on what we know today. But I do hope for better technology in the future.

She COULD thinking and aware, as a 3 month baby is a bundle of life and curiosity. I pray for her with all my heart. What karma put her in that condition for life????

Vinnie said:
Also Mengele's "research" was poorly planned torture. The Nazi's did conduct some "useful" experiments but not under Dr Mengele. (An interesting quandry for the victors was how to deal with the research the Nazi's gained into the effects of decompression on the human body - vital for high altitude flyers. Unfortunately they'd done the research by locking people into chambers and sucking the air out. Could the Allies in good concience use it or had the poor people died for nothing - but we are getting off topic here.)

Good point, since the good guys could have never performed such experiments (and published the results). But the information is there, why not use it. Seems simple to me, but than again I am simple minded. LMAO

The question can she/others be put in a coma, is valid, but most people would object.

For me the greater issue is how much control do we give the government?

I like the reference to the movie "Coma" it would be efficent to hang them up. Minimal effort on our part. But hey, just do the "Soilent Green" method. LOL

This and other issues are governed by individual moral codes. So as long as we have such varied opinions I guess the conclusions will be as diverse. We should learn to respect the rights each other.

CG write
I would consider a medically engineered human who is born/created outside the conventionally accepted concepts of conception and delivery Engineered human would be one made under lab conditions and clones would certainly be covered.

I AGREE. The concept of reengineering an existing human is even better than creating one from screach. Of course I would start with me.


Euthenisa only upsets me when I am not asked do I want some.... And from what I see it is usally passed out. The only person that does not vote is the one getting it. Hummmmm, can we trust such a system?

There is a murder trial here, the rich guy was gunned down while driving. Police called it a mob hit. But the defence says it was 'assisted suicide' LOL

[kiki5711]

by jungleboy
There is a murder trial here, the rich guy was gunned down while driving. Police called it a mob hit. But the defence says it was 'assisted suicide' LOL

Ha, ha ha ha , these lawyers kill me with their sense of humor which really is not funny at all but they still do it..........LOL

Yea, that's the way to die, hire someone to gun you down!!!!! how dramatic is that!!!! and those who believie it are even more crazy!!!!!

[MichaelArchangel]

Ashley has not developed physical and mental abilities past that of a three month old baby. She does not have the neurological abilty to lift her own head and medical opinion is that she will never achieve cognitive skills greater than what she has at present.

I can and do appreciate those that have examined her and are making the decision as professionals, however as the father stated, it is an unknown condition, this statement by its very nature gives me reason for uncertainty on just how to make the 'right' decisions for Ashley.

She is not in a vegetative state and as most three month old babies she experiences hunger, pain and I'm sure with the right stimulus like any three month old baby she would experience pleasure.

Qualified medical practioners assert that Ashley's neurological capacity will never be more than that of a three month old baby and they use that as a basis for the treatment that she has undergone.

Again I submit this is a guess, since there is no prior case studies for them to reference unless there is medical evidence her neurological system will stop developing I don't see the legal, moral or ethical standard to perform such a procedure. Remember the Terri Shrivo case case? Qualified professionals made their prognosis also!

I acknowledge that her parents truely do believe they are doing the right thing by their daughter and from what I have read about them they are appear to be have a financially stable future, in other words they can afford the treatment that their child is receiving.

I am in total agreement here Flynn can't I be of sound mind and understand both sides of the coin?

What about the families who can't afford such treatments ?

Excellent point, we all know unless a charity comes into play often times those that get good medical or new radical treatment are those from the top 10 percent.

I also take it as a given that Ashley's doctors are competant and caring people and would not have agreed to her treatment unless her condition is based in fact.

Fact is sometimes a social construct; the panel agreed this is best so it is fact, even though they haven't a clue what is going on with her. I am glad I don't have to be subject to such fact. (As of yet in my life, but there may be a time, who knows what the future holds?) Point in case the holocaust never happened, it is fact for those crazy freaks in middle east, yet facts also dictate is has happened, a shift in paradigm is all we need to change facts!

The reason I put this thread up was not to necessarily judge Ashley's parents but to assertain where this Brave New World of medical practicionary stops and or starts.

By no means am I judging anyone, please re-read my posts, I feel for all involved as they have to live with the decision they make, I am just discussing those decisions and the potential ramifications for the individual and society at large, nothing more, nothing less!

Brilor commented that the treatment is akin to what Dr Mengele was doing in the 1940's, a harsh comment but not far off the mark.

The Robin Cook novel " Coma ", in that fictional story patients had bolts screwed into their limbs, wires were attached and they were suspended from the ceiling to eliminate the need for intensive care nursing.

Is the fictional story " Coma " the next reality in medical technology for those that can afford the treatment ?

If the affluent or if the 'system' feels some is easier taken care of by radical means, those that are questionable, where does the onus lie? Who has the ultimate decision, those with the purse strings naturally, the natural course of things in our world!

Truth is stranger than fiction and fiction has a habit of becoming fact.

In everything I have read about Ashley I am yet to read what if any government department gave approval for her treatment to take place.

I hope I am clearer as I didn't mean to insinuate I was judging the parents, in fact I stated to the contrary in my prior posts. I am trying to address those ‘larger’ questions you pose.

Looks like I missed on some input as the tone of the debate changed over night...

Regards All!

Mich

[MichaelArchangel]

Parents halt girl's growth to ease care
Sam Howe Verhovek
Los Angeles Times
Jan. 5, 2007 12:00 AM


The radical solution has drawn plenty of criticism and even outrage from some doctors and caregivers, who say it is a fundamental violation of a person's dignity to impose such impairment of their growth. Some say it's also a violation of the medical oath: First do no harm.

But Ashley's parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can still carry her.

As a result, they say in a written account posted on an online blog, "we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long."

The girl's treatment has involved a hysterectomy, surgery to remove her breast buds, and high doses of estrogen.

High-dose estrogen was used occasionally in the 1950s and 1960s, mostly on teenage girls whose parents were concerned about the social stigma of being too tall. The drugs could stop a 5-foot-9 girl from becoming, say, 6 feet tall.

As that stigma has gone out of fashion, so has the treatment, medical ethicists say.

But Ashley's case involves an entirely separate ethical realm, that of whether a severely disabled person's life might be improved by having his or her growth impaired.

Publication of the case in a national pediatric journal in October set off criticism of the parents' decision: "eugenics," "slippery slope," "Frankenstein-esque" and "despicable" are some of the printable contributions to various Web sites on the topic.

This week, Ashley's parents began telling their side of the story on an online blog.

"I cannot explain something this complicated in an interview," her father said by telephone Tuesday. "People think it must have been a horribly difficult decision. . . . It really wasn't."

The parents have not identified themselves publicly.

Medical experts could not say for certain whether the case is unprecedented, but they did say the radical treatment to inhibit growth of a profoundly disabled person had never been discussed and debated in mainstream medical journals before.

"It's simply the first reported case any of us know about," said Jeffrey Brosco, a pediatrician at the University of Miami who was co-author of an editorial criticizing the treatment in the October issue of the Archives of Pediatrics & Adolescent Medicine.

"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties.

"And our societal ethics may change ... but we are going to have to discuss this as a society. We are going to have to say this is right or this is wrong and, thus, decide whether we will allow it."

In the editorial, Brosco and his co-author, Chris Feudtner, called growth attenuation "ill advised," though they applauded the Seattle doctors for publishing the case report and helping "advance our ethical dialogue" on the topic.

If the treatment becomes more widely available, Brosco and Feudtner wrote, parents of severely cognitively disabled children could feel pressured on a number of fronts to have their children undergo it, to avoid the agonizing future choice of whether to send the fully grown child to an institution.

"High-dose estrogen therapy to prevent out-of-home placement simply creates a new Sophie's Choice for parents to confront, where neither letting the child grow unchecked nor imposing shortness is without peril," they wrote.

But Daniel Gunther, a pediatric endocrinologist who has overseen Ashley's treatment at Seattle Children's Hospital and Regional Medical Center, said the approach is a humane alternative that parents like Ashley's may find to be in the best interest of the child.

The case arose when the girl, at age 6 1/2, began to show unusually early signs of pre-pubescence, including pubic hair and the initial stages of breast growth.

As the parents consulted doctors, Gunther wrote in his description of the case in the journal, it became clear that "the parents particularly feared that continued growth eventually would make it untenable for them to care for their daughter at home, despite their strong desire to do so."

Gunther told the parents that growth attenuation was a possible option, and soon, the parents were strongly pressing for the treatment.

The case was brought before the hospital's ethics committee in 2004. Given that the child was found by a variety of doctors to be profoundly impaired, with virtually no indications of improvement in her intellectual development, the committee found in favor of the parents' right to seek growth attenuation.

Dr. Douglas Diekema, an ethicist at the hospital, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not and is doing well, he said.

In the future would people perfer I post a link or copy and paste as I have done here, of course citing the author?

Mich

[MichaelArchangel]

I just read an interesting article by Arthur Caplan, PhD, who is the director of the Center for Bioethics at the University of Pennsylvania:

I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families.

For the rest of this story see link: Doctor Anonymous: The Ashley Treatment

Like Crude said the road widens with no black and white shoulders to buffer decision making.

However, the middle remains intact and more secure and ethical in my opinion.