Do you think this couple is unreasonable?

[corgiology]

www.itv.com/thismorning/hot-topics/branded-cruel-for-having-our-daughter-alice-treacher-collins

[MaidOfStars]

bumbley Without getting into your well-established views on the potentially wider debate, what are are thoughts on PGD?

[bumbleymummy]

Really thought provoking thread. Reading with interest.

[bostonkremekrazy]

re cost

my children have a similar cranio condition to TCS....they were offered surgery in great ormond street to make their faces look more 'normal'....

we declined that surgery because it was for cosmetic reasons only - it would not improve their health in any other way. we asked what the cost to the NHS was for the op, the answer £30K for each child! for an op we did not ask for, that would not benefit their health - and that in our opinion they certainly did not need!

thats without discussion around the ethics of putting children through surgery to make them look 'normal', when it involves cutting their skulls open, peeling forward their faces, using a hammer/chisel to shape their bones, eye sockets etc.....why would a parent choose that? more to the point - why would a parent choose not to screen these syndromes out?

[MaidOfStars]

PHGD? PGD

[MaidOfStars]

Lifetime costs of some diseases on the PHGD list:
Beta-thalassemia - £200k per lifetime
Tay-Sachs - £20k per year (children die young)
It costs the NHS £30k for a hip fracture (Osteogenesis imperfecta - tip of the iceberg for patients)

So anyway, yes it should be free for serious, high risk couples. Some of the stuff on the list I might not offer for free - minor eye disorders and so on.

[Royalsighness]

Some of the replies on this thread make me think of eugenics.

[MaidOfStars]

Sorry, the above doesn't account for the IVF portion, which would be an extra cost to enable PGD for most couples. So double it to £3.2m. Again, still way less (but now checking).

[MaidOfStars]

Pico I worked through some figures. We have maybe 400 cycles of PGD in the UK each year. Each costs around £4k on top of IVF. So, that's £1.6m per year to fund. I reckon that's far less - far far less- than the cost burden of helping and treating sick children.

However, that assumes that all of those healthy pregnancies would have otherwise been unhealthy, and we're actually dealing with risks around 25-50%. So the £1.6m cost might have to be balanced against only 25%-50% of the cost burden of helping and treating sick children. Again, I still think the screening figure will be way lower. In the course I teach, the cost burden of CF is around £500,000 per person for 50 years.

[Pico2]

I think that the genetic screening should be available free on the NHS for parents where one is known to carry this gene, irrespective of the funding of the IVF. Couples could then choose to have preimplantation screening for it or not. Realistically £9k for screening would cost less than the ongoing care that a child with TCS. That doesn't mean that I think screening should be obligatory or object to the cost of care for those with additional needs. I just think it shortsighted for the state not to provide the option to those couples who have a known risk.

I do think about the potential babies that DH and I don't have. We have 2 DDs and it took a few months to conceive each of them. If we had conceived earlier or later we would have had different children. If we tried for another, we'd have another individual, but I don't think we will - so that is a child who will never exist, or actually many children. I personally don't see the selection of embryos to be much different to all of those potential embryos that we choose not to conceive each month. Given that we knew from the start that we would probably have no more than 2 children, I think we would probably have chosen to avoid having one with a potentially severe genetic problem. But we were never in that position, so It is impossible for me to know what decision we would have made.

[MaidOfStars]

10% of ALS is familial/inherited. It can follow both autosomal dominant and autosomal recessive patterns. The most frequent known cause is mutations in SOD1, but they only account for around 20% of familial cases, so lots of other genes out there waiting to be found.

[TwerkingSpinster]

Why allow your child be be born afflicted, to then spend her life trying to fix and minimise the effects with painful operations!? Why not do the 'fixing' at source by choosing a healthy embryo. Then to parade the poor mite on TV hoping to have their choice applauded makes me angry.

[GlitterNails]

MaidofStars - genes aren't my strong area, but I believe that's something different.

I.e. My condition is an Autosomal dominant genetic condition. My children would only need my faulty gene and they will have the condition. There is a 50-80% chance of it being faulty. Huntingdon's is another example of this.

Then there are conditions where the child needs a faulty gene from both parents, which is an Autosomal recessive condition. I.e. Cystic Fibrosis and Sickle Cell.

But there also conditions that fall under genetic conditions - heart disease, Autism, Spina Bifida, MND, etc. When you have this condition and have a child their chances rise slightly, but it's not a direct heritable condition in the same way as my condition. There will be other factors including both patents, environmental, their general health, and it can come from other sources - not from parents/family members.

That's my understanding, anyway.

[Foreverlurking]

I don't know if I'd go as far as selfish or cruel (would if cost was involved though).
However I still think they should have screened. Why risk it? Remember they had to make the desicion before this child was born or even before she was a feotus, so it wouldn't have been a question of 'getting rid of' anyone, so to speak.
I also don't think the fact that people can lead a normal life is relevant, because it could be so, so much worse than that. It's agonising pain for a lot of people with this condition, so again I just can't fathom why you'd risk it.

[MaidOfStars]

Errant 's there. Was phrased differently in my original sentence!

[MaidOfStars]

Motor Neurone Disease isn't a heritable genetic condition

5-10% of cases are inherited/familial. I don't think Hawking's falls into that class though, so your point stands.

[GlitterNails]

Aussiemum - Motor Neurone Disease isn't a heritable genetic condition, so Stephen Hawkin's parents didn't make that decision.

And no it can't tell the extent - but that goes either way. It could be far worse than thought.

[Aussiemum78]

If you googled my genetic condition you'd be of the impression I'm covered in lesions and suffering multiple cancers. I am probably also mentally retarded.

Despite the gene though, I'm relatively healthy and unaffected. No illness, very intelligent.

I'm certainly glad my parents didn't test and discard me! I think the world is better off with steven Hawkins too!

Genetic testing can't tell you the extent of a disability.

[MaidOfStars]

(To the poster upthread who pointed out issue with using words like "unhealthy", I completely accept and acknowledge your point; I'm using shorthand here).

[MaidOfStars]

For those parents not to go through with this, the father would have had to think "On balance, has my life been worth living?" and then answer "No - I might as well not bother with this then", which is a ridiculous thing to expect him to believe

I disagree. The father (and mother) made a far more active choice than that. They didn't choose between a life or nothing (which is what you propose). They chose between a healthy life or an unhealthy life. That's different, I think.

[TwerkingSpinster]

It all just feels like they wanted to present as being 'right on' and 'cool' about the condition. Like, its no big deal....I'm OK with it.....my life was worth it etc. But in reality, a poor baby faces a life of painful operations, bullying, disfigurement, just so the dad didnt have to be made to feel like his genes are rejects. Vanity. And I pity the baby. Why are they bragging about not screening? Its like they want praise.

[angelos02]

I do find it hard to understand that they didn't go for PGD simply because it cost more and meant more travelling. yy to this.

Some £'s and a bit of travelling is nothing to prevent a lifetime of suffering.

[hibbledibble]

I don't think it is for anyone else to judge them, but I do find it hard to understand that they didn't go for PGD simply because it cost more and meant more travelling. Especially as there will be a lot of cost and travelling associated with having a child with additional needs.

[TheAnalyst]

For those parents not to go through with this, the father would have had to think "On balance, has my life been worth living?" and then answer "No - I might as well not bother with this then", which is a ridiculous thing to expect him to believe.

[MrsMcColl]

Totally what GlitterNails says. I would have chosen to spare my family that, as well as choosing to spare my daughter the pain and struggle she lives with.

[GlitterNails]

To me a lot of the struggle isn't with the person with a disability - but the world we live in. We live in a world where about 80% of my town centre is inaccessible to me in a wheelchair. A world where I've been discrimated against due to my disability at every work place I've been at. Where I had to go through two awful and horrendous tribunals where I felt like a criminal to receive the benefits I needed. Where I have to fight like hell for every scrap of help I'm given.

A world where disabled people are actively targeted in the media and by the government where that help could vanish at any point. A world where I have no specialist consultant as the NHS doesn't have the resources, so I feel like I've been left to rot. A world where people have the most awful attitudes towards people with disabilities.

Battling all that in itself is like a full time job energy wise.