Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

I heard this morning doctors talking about the childs quality of life being vastly improved by not going through puberty etc. WHen put that way, it's a common sense decision as well as being ethically the right thing.

Agree completely Aloha. I find it offensive that people think the parents did this for their convenience. They love their daughter and want her near them, how is that being convenient.

And to tar all American doctors w/the same brush, and say they're ruled by money and drug companies, is not only patently untrue but also insulting.

Luckily Ashley has more able and stable parents than Charlotte. They are wealthier, more educated and have fewer of the difficulties that Charlotte's parents have. I think they must be very, very strong people to not only cope so well but to be so effective in seeking out treatment.

No, the criteria is based on physical and medical needs but most of our children we have have mild to moderate learning difficulties. There are some who have more profound learning difficulties as well as physical disabilites who really shouldnt be in our school as we dont have adequte training and resources to deal with them but sadly there is no where else for them to go.
Dont want to say too much more due to anonymity!

Un;ess I read wrong, it DID go before the ethics committee, which means that it was looked at very carefully and the possibility of money grabbing monster surgeons or whatever, or cruel aprents, was wiped out. A right/ wrong scenario isnt possible here as values differ but theres no cruelty involved

I can see that people might worry that people with less disabled children might want the same treatment for them, or wonder how profound the disability has to be to make this ethical. But the more I think about this particular case, the more I think it makes sense for this child.

Thanks for replying northercules - I understand. Before ds1 went to his school I had only come across one child with profound learning difficulties, whenever I go into the school/ meet the parents, the children with PMLD really move me. They've taught me a lot about the meaning of life etc (if that doesn't sound too naff- but really they have)

I think a 21st century world is one where we can make decisions like this for the good of an individual rather than shy away from using our medical technology for fear of being branded as nazis.

Try this

Its a BBC news forum which has a selection of 'for and against' arguments, makes interesting reading.

I can't imagine why anyone with a less disabled child would even seek the treatment though Aloha. Sure I'd like ds1 to grow up asexual, life would be a lot easier for him, but his level of diisability isn't such that I would seek out surgery for it. If its treated on a case by case basis with ethics committees etc I don't see a problem. It's an extreme measure- for extreme circumstances.

I know that a few of the severly auttistic young adults we had when I was working in the unit JimJams were to all extents and purposes asexual. The severest tended to be, althou severe there really was the highest end of the scale- one to one 24 hour care, sedative injections always on standby.

Well, some might, I suppose, and I think it is fair to discuss at what point this treatment would be ethical, but my real point is that while that sort of discussion is fair enough IMO, but to be so scathing and judgemental about two loving devoted people who are living in what to most of us would be a nightmare, is just horrible, really.

Intersting link Toastee, unfortunately IMHO the Beeb is no longer an independent vox pop, but a polictically and personally driven corporation, so in the same way that I take their news opinions with a pinch of salt, I don't think I'll be taking their 'selection' of quotes too seriously - there may well have been 1,000 for and 5 against, or vice versa.....

Yeah- ds1 isn't at the level (have you read Growing Up Severely Autistic they call me Gabriel- that;s my image of very severe- ds1 isn't anywhere near that severe iyswim). I don't woorry about the masturbation stuff (sure it will make life interesting), but I worry about him ending up in a postion of abuse iyswim - either way round- how could he be responsible for his actions when he has the language development of a 12 month old.

As jimjams said below, surely these things can only be weighed up on a case by case basis. Seems very presumptious to have much of an opinion without being party to all the information.

And I know from personal experience that to get anything, anything at all, past a hospital or university ethics committee is a major undertaking. Even the most innocuous, non-invasive, fluffy experiment you could design involves reams of paperwork, assessments of every risk you could think of and quite a few that you couldn't, and often a face-to-face grilling as well.

Clearly everybody who was involved in making the decision on this child felt that, on the balance of probabilities, her interests would be better served by going ahead with the treatment. There will have been an enormous amount of debate on the basis of vast quantities of information. To second-guess those decisions on the basis of media reports is frankly risible.

Yes agree frogs- am about to submit a very non invasive fluffy, not even experiment to an ethics committee and my god, the hoops- all 58 pages of it.

slightly off topic but This whole topic has played on my mind today.
over here would it be considered against the childs human rights?

yes agree aloha.

2shoes hang on, I hve the Human Rights stuff- will take a look

thanks.

Im looking at the UN, haven't read it all- most is irrelevant- but there's 3immeidately that could inspire a debate by the anti's:

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Everyone has the right to life, liberty and security of person.

No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

but the Pro side (sorry, divide everything into anti and pro at Uni LOL):

(3) The family is the natural and fundamental group unit of society and is entitled to protection by society and the State.

Article 25.

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.

Its never simple, everything is just a debate really. And the USa don't really do the UN charter anyhow.

i suppose - given more detailed consideration would be taking place of all the issues this could come under protection of the family anyway. In any case its so complicared blanket rules would never be appropriate.

Exactly JimJams, and the human rights weren'treally drawn up for those purposes. that's why we have Ethics. I mean, we all ahd to be iinterviewed (including the Psych professor) and sign umpteen forms just to repeat the annual lost postcode experiment 9where we all drop postcodes in differinga reas with all the same details except Lord, Sir or Mr as the name) and see how many were returned. We didn't even get to MEET any subjects LOL!