Medically Engineered Humans

[squirt]

Originally Posted by MichaelArchangel

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

no, I appreciate you're bringing it here, I dislike links lol sometimes they lock my computer up lol it gives much to think about and makes me grateful for my healthy children and grandchildren, I don't envy anyone this kind of decision but I think in the end, the quality of life is the main issue, for everyone

[sexysadie]

Originally Posted by 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.

Would you look at that face!? What a beautiful little girl. When I look at her I think of my daughter. The last thing I want to do here is judge these people. I have no idea what they face on a daily basis, I can only imagine. I've been blessed with two healthy children..never have I ever had to face such a decision and for that I am and will always be eternally grateful. But, as a parent of a little girl myself..and as I sit here staring at that little girls picture...I know that I would never give up hope. Like Sybarite said, miracles do happen...why not for Ashley?

[Dutch]

Originally Posted by 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 ?

Interesting.
The diagnosis says a lot "static encephalopathy of unknown etiology" in the sense that it is static and has been so for nine years. Since development of the brain, normally, takes about six years, I would think that means that there won't be much chance of the brain developing much further at this stage. Basically, what she has is what she will have to work with.

Seeing that the treatment resulted in a publication, that would indicate that there has been a lot of work done to analyse the alternatives before resulting to this option. I think that if parents go through such lentghs, they are capable of making extremely difficult choices.
However, there are laws and procedures that are extremely strickt in cases such as these and there are lines, the parents do not have complete authority. If I remember correctly, extreme treatments in this country require at least three indepedent doctors to come to the same conclusion before a parent is offered the choice of such a treatment. I can't remember the exact requirements, but I know they are extremely strickt(I came across them in my studies last year). Therefor the parents have the final say in such matters, but only after medical experts have narrowed down the choices and explained what the consquences of the choices are(in detail!). But I don't know the laws in the US.

[Dutch]

Originally Posted by sybarite

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.

I'm all for hope, but the brain is extremely difficult. The stem cells you mentioned are pretty much absent in the brain after the age of six. If the neurons have not developed by then, there is little chance they ever will.
It is however not absolute and there are indications that there are a limited number of neurological stemcells in the adult brain, but messing with those could have devastating effects. So it is a dilemma and the choice made is never a "good" choice. Radical treatment or extreme risks.

[Flynn]

An excerpt from Doctor Anonymous


Even though the parents deny it, the case will be built that Ashley was treated in this manner as a matter of convenience for the caregiver. So, the next child who is deemed to have "brain damage" and will be difficult to care for will now be eligible for The Ashley Treatment. Think I'm crazy? Possibly. But, mark my words, this story is just starting and will play itself out throughout 2007.

Ethics always lags behind science. When that happens, the legal system and possibly even the government get involved. And, that's where things get ugly. Things get more political. The activists with political agendas get energized. I won't be surprised if this very issue is inserted into the 2008 US Presidental campaign.

Thanks to Mich for the link it made for imformative reading and I can also thank him for discecting my previous post which he obviously thought I popsted at him rather than to the forum.



I've read all the comments I took special note of what Syb and SS had to say, SS summed up part of the debate in her closing statement of " Like Sybarite said, miracles do happen...why not for Ashley? ".

Dutch pointed out that according to medical terms Ashley will not make a recovery and from what I have read about her case I really do have to agree with him but hey without hope when faced with any issue we become hopeless.

As pointed out by Dr Anonymous ( see Mich's link ) this story is not going away anytime soon, it opens up questions of medical ethics, parental responsibility and how governments should be involved.

It also highlights that disabled people are humans and deserve to have the same rights as able bodied people.

[MichaelArchangel]

"Thanks to Mich for the link it made for imformative reading and I can also thank him for discecting my previous post which he obviously thought I popsted at him rather than to the forum." Quote from Flynn!

No my friend I just used your post as a platform to further elaborate my perspective nothing more nothing less.

Again I will reiterate, this is a much larger ethical dilemma than the Terri Schivo situation and will have much further reaching ramifications than many cases before it in the last century, just my foolish opinion though!

Regards all and to all freedom of thought!

Mich

[GoldCoast]

That's a tall order there Mich.......That freedom for all to think freely thingy...

[jungleboy]

Mich wrote:
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!


Facts the change???? What a concept... however as I think about it more, it makes even more sense.

So my first thought was of science (Galleo), as his error was later proved to be fact. But now truth/fact has been changed to be not factual.

I know in history/politics the facts change depending on who is in charge. I do hope science is more careful. What is the age of the universe?

Questions: Can procedures be imposed to keep the cost of caring low. i.e. Big people big cost.

And if they will never get any better why not shorten their life span. Shorter life lower cost.

What do we do when the caregiver no longer can or wants to give care????

I know at first you will say how cruel and unloving. The world I know is so uncaring I actually hurt when I look at it. Anyways... It is nice to hear you all say comments based on love and compassion but......

GOD BLESS US ALL - - OR WE ARE ALL F*(%ED

Speaking of which,,, there is a story in the bible about the tower of Babylon. To much knowledge and confidence for humans to handle..

[essex boy]

Just wanted to bring this to your attention.
Congratulations,Flynn
Flynn gets Featured on CBS News

[GoldCoast]

Good on him! Way to go Flynn!