Do you think this couple is unreasonable?

[corgiology]

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

[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.

[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.

[MaidOfStars]

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

[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.

[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.

[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.

[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.

[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]

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.

[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).

[Royalsighness]

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

[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.

[MaidOfStars]

PHGD? PGD

[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?

[bumbleymummy]

Really thought provoking thread. Reading with interest.

[MaidOfStars]

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