Do you think this couple is unreasonable?

[corgiology]

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

[MaidOfStars]

If they had done the screening, they would then have had to decide which embryo(s) to use

Just to add to the debate: the clinic would, I believe, have made the decision to discard embryos carrying the TCOF1 mutation. I think if you are prepared to screen, you automatically give consent (whether formally or "morally") to unhealthy embryos being removed. I can't imagine the ethical minefield of a clinic being requested to deliberately implant unhealthy embryos.

the cost of screening would increase the cost of the cycle greatly
I believe this one of the factors quoted. I find it interesting that the cost:benefit isn't in favour of free screening for TCS (given the possible future burden on the NHS). I shall do some research.

[CitrineRaindropPhoenix]

I can understand why they didn't screen.

DH has severe haemophilia A. As he was infected wi hepatitis C as a 7 year old, we were advised to conceive by IVF to be on the safe side because there was a risk of transmission, albeit small.

We refused pre-Implantation testing for the simple reason that it is primarily a genetic mutation from the mother. Without a family history there is nothing to test for so DSIL can be tested as they know what DH's family mutation is, I cannot be tested as there is no hint as to what to look for.

In any case, were used to living with the worst case scenario of haemophilia and it is manageable, the testing therefore seemed unnecessary.

The clinic were horrified partly as they just didn't understand the genetics (slightly concerning). We had a few interviews with SS before we Were allowed to proceed.

[MaidOfStars]

Citrine I'm not really following you (from an academic POV, not questioning your decision in any way).

Hemophilia A is X-linked. Your husband carries the mutated gene on his X chromosome, which would necessarily be passed to a daughter. This daughter would be a carrier, not a sufferer (assuming you are not a carrier). She may then go on to pass that mutated X to future sons, who would be sufferers (this is your SIL's situation).

You would probably know if you could be a carrier, because you'd likely have male sufferers in your family. Assuming you don't, your carrier risk is very low (1/2500). So testing (unless to screen out carriers - a different debate) was probably not worth it.

I'm gobsmacked the clinic didn't get the genetics - it's a classic genetic inheritance model at GCSE level. What were they arguing? That carrier screening was desirable? You were very unlikely to have an affected child. And SS were involved?

Was it a case of: you've had IVF so doing PGD for is rather straightforward, so you may as well? I must be missing something here?

[RusticBlush]

You would have to walk a day in their shoes to fully know their reasons.
A family member of mine who carries a gene for a genetic condition got pregnant and went for tests to be told that the way the placenta was lying there was a risk of miscariage if she continued with test - she knew there and then she was having this baby regardless and yes her child does have this condition but leads a happy very fulfilled life - don't be quick to judge.

[holdonaminute]

I have an (adult) child with an inherited condition which has affected his quality of life. If the option to screen had been available at the time ( it wasn't) I would have taken it. That doesn't mean I love him any less but if I could have prevented his suffering I would have.
However, that is just my opinion. I respect this couples choice and admire their courage. They are loving caring parents. What a lucky little girl being born into such a wonderful family.

[SoldierBear]

Mrs DV makes an excellent point about deaf parents.
Or how about women who carry the gene for breast cancer?
As there are more and more developments in medicine there will be more and more conditions that can be screened for. Some parents will be aware of family history and choose screening while others will not; some parents wil be unaware of family history or unable to afford screening while others will not even consider it and decide to welcome their child regardless.
And some families will experience a spontaneous gene mutation.

There are so many variables. I believe it is up to each couple to make what they consider to be the right choice for their family, with the proper support and information, of course.

[TwerkingSpinster]

I seem to remember this man doing as documentary on his condition, and talking about screening. He looked stunned that embryos with his condition would be 'thrown out' and got all "but then I wouldn't exist if my parents had done this". I think his forcing his children to play Russian roulette with a nasty genetic condition is just his ego. He can't face the idea that he, as the embodiment of the condition, is considered a reject.

[Justusemyname]

No.

No ones business

Lovely family. I wish them well. Anyone who doesn't is a twat.

[CitrineRaindropPhoenix]

Exactly Maid. The clinic got as far as genetic abnormality = pre-implantation testing.

They found it difficult to accept the fact that I have no family history of haemophilia and 2 healthy brothers means it is vanishingly unlikely and not worth testing for.

The fact that we refused testing despite known genetic abnormality seemed to be a sufficient reason Forthe referral to SS. Luckily we had a sensible social worker who accepted our reason s, including the fact that if I had a random genetic mutation which cause haemophilia, at least we knew what we were getting into .

[frankie80]

I know this couple. They are lovely and wonderful parents. Some very very cruel people on here :O

[Kewcumber]

Were you asking for my opinion out of genuine academic interest or trying to throw some mud at me?

Well not out of academic interest, no because I'm not an academic. But yes out of genuine interest which is why I corrected my use of the word "forced" afterwards because it had rather emotional overtones (because I was typing quickly).

I'm not really interested in throwing mud.

I feel that saying people who feel the couple should have gone for screening 'are in favour of forced sterilisation' IS hysterical!

The point I was trying (and obviously failing to make) in response to the comment that they "shouldn't be allowed" to make this decision is at what point do you allow people to make the decision? They shouldn't be allowed to decide not to screen for this particular condition. How about Huntingdon's or CF? I'd rather have TCS than HC anyday personally. And what if we decide that people with screenable genetic conditions have to have screening, what comes after that? All people with those conditions have to have screening? Why only those having IVF - if it's an unacceptable risk to a child then it's unacceptable. I don't see how it's acceptable to take the risk in some situations and not in others.

Screening is available to everyone at a price - why mustn't they all have it?

This particular couple haven't taken any more of a risk than if they were conceiving naturally.

It's VERY different to say "I don't understand why they didn't screen, I would have" to "They should not be allowed to have this child".

And what about the risks of the removal of the cells for testing - what if the embryo is damaged as a result and a different and unforeseen problem arises. I guess thats OK because that's an acceptable risk? And someone has deemed the risk of having a child with TCS as an unacceptable risk?

[catswag]

I think only them can judge and they do seem like v loving and caring parents

and you can't say what you would do unless you've been in this situation

however what what I THINK I would do in that situation esp if having ivf anyway would be prescreen
the more expense and having to travel 2 hours was certainly not enough reason to not pre screen
the child ultimately will be the one that has to live with their descion, it mush have been extremely difficult for them
I hope if they have more dc they will prescreen for the childs benefit
as that's whos interest if ultimately the most important imo


I wish the lovely little family all the best

[toomuchtooold]

maidofstars, clinics will allow you to implant embryos with a dodgy result from PGD - we did PGD and were told we could if all ours came up dodgy. PGD is quite new and is used for a variety of genetic and chromosomal abnormalities so there's pretty small sample size for most conditions, therefore there's still a margin of error on the results. (For us it would've been a no-brainer in the case that we had all dodgy embryos, as the abnormality I carry isn't generally survivable, and I would have been prepared to take the risk of late abortion/a baby who didn't see out the year. We were very lucky though to get a couple of sound ones, who're currently yelling at each other in bed. SHUT UP LADIES. Honestly, for miracles of modern medicine they are really badly behaved...)

[OneMillionScovilles]

Haven't RTFT. However, a PP said 'she could have been spared the...' etc. No, she couldn't. The is the 'Identity Problem' of bioethics - they could have altered the amount of potential suffering in the world, but no discrete child could argue that he or she was worse off for their decision (short of a genetic disorder so severe that it creates 'a life not worth living'.

[sconequeen]

So, to get back to the argument, preventing or aborting a baby with a disability is only equivalent to saying adults with the same disability are worth less if you think that in general there is no difference between the value of an adult life and that of an embryo/baby.

I would be quite insulted if someone said I was no different to an embryo.

But this is just your view. And you don't (as you said) have to be religious to believe that life begins at fertilisation rather than at birth.

Just because you and I have been around longer does not necessarily make us worth more than an embryo!

I don't know this couple's views but there are people who would find it unethical to choose between embryos because they see them all as living things, even at that early stage.

[ThisTimeIAmMagic]

Scoville I'm afraid I disagree with that. I think 99% of children in that situation would be horrified if they thought they could have been spared suffering but their parent chose to carry on regardless. They would not feel that their life lacked meaning or purpose but I imagine they would ask questions about why they had been condemned to live with an avoidable condition.

None of this takes away from the fact that these parents love and care for their child day to day. It's not about being cruel people judging them as individuals but it is perfectly valid to disagree with the choice they made when there was a viable alternative.

It does raise interesting questions about other conditions that could be screened for and where we draw the line. These are bigger issues than this one couple and their child.

[bostonkremekrazy]

i am mum to 2 children with a genetic craniofacial condition.

the difference for me is that i am their adopted mum. they waited in foster care for a family like us who would chose them knowing that we would not bring home children who would be straightforward or easy....they waited a long time for us. children like them languish in care because they are the ones who are 'not picked' as babies, they are not pretty in the worlds eyes, they have constant medical appointments and their lives are not straight forward - and our children are 'mildly affected'.

last week we had 4 hospital appointments. this week 2 appointments. this is normal for us.

we hold them down for doctors who stick them with needles, who put drops in their eyes, who touch them when they dont really want them to. They have needed sedatives for MRIs/X-rays etc, GA's for minor procedures. for a year one of ours slept on a SIDS monitor. They take medicines everyday.

they make me smile everyday.

i never had to make an IVF screening decision because my children were already here - but i do think if you can make a decision to screen an embryo and not implant it in order to not create a child that WILL suffer then we have a responsibility to do so.

[quitedisgusted]

Yes I've named changed but I'm so disgusted at those of you wishing away these children who may not be 'perfect' in your eyes. I wouldn't change my child for the world - yes they have additional needs but they are happy and lead a 'normal' (to them) exciting life - all of our children will cross paths which are not ideal, you do not know what is round the corner but I can't believe those of you saying 'if only them tests were available when I was pregnant with xxx' when you have that child infront of you living and breathing now.
I am very aware in ideal world we'd all not have disabilities but they are not 'rejects' or anything less than a (for now) fully functioning person - you never know when your or any undisabled persons life will change.
I am absolutely fuming reading this thread, sheer ignorance.

[Chchchchangeabout]

That child wouldn't have scored at all if they had pre-screened. I think the ethics are partly about whether you screen out the whole possibility of a person from existence because of their genes.

[Chchchchangeabout]

Scored?!?? = existed.

[ThisTimeIAmMagic]

disgusted I'm not really sure why you found the posts so upsetting. No one is saying that children with additional needs are anything other than precious and much loved, just as they should be. No one is saying they are rejects - you're the only person on the thread to have used that word but the thread has obviously touched a nerve

People (including me) are just saying that if you have the choice to have a child with a longterm, painful debilitating condition or a child who doesn't have to face that additional burden, most people would prefer the latter for the sake of the child. As you say, life is unpredictable enough and brings us all struggles but personally if I had any opportunity to spare my child avoidable suffering before they were even born, I would grab it with both hands.

[quitedisgusted]

RTFT Thistime, I certainly wouldn't pick 'rejects' out of thin air.
I'm sorry you're not sure how I'd find this thread upsetting, I know you're being kind with your words but I am very upset by the thread, its definitely touched a nerve.
So many reasons but most of all the ignorance of people not knowing how some people become mothers of children with certain conditions/disabilities...it really could happen to anyone.

[bostonkremekrazy]

yes that child wouldn't exist at all if they pre-screened, but it is likely that an unaffected sibling would exist - the sibling that would have/could have been their child....

likewise my two children wouldn't exist at all if their bio mother had pre-screened (or if in bizarro universe i was bio mom and i pre-screened) BUT it is highly likely that non affected embryos would have grown and become those children who are my babies
their siblings who are non affected are hugely similar to them, they look alike, act alike - i could imagine them as mine IYSWIM....i would have never known my own children, would never have known any different.
without the pain, without the difficulties every day - without the shit life throws at them because of their disability.
why not screen it out?

[Pumpkinpositive]

I can't imagine the ethical minefield of a clinic being requested to deliberately implant unhealthy embryos.

The word "healthy" is a really loaded term here, but it has been done (and failed). There was a big debate in the Deaf community a few years ago a round Deaf parents not being allowed to select deaf embryos in IVF treatment.

Regarding the current case, is the child "unhealthy" in some way other than having TC?

[ThisTimeIAmMagic]

Of course it could happen to anyone disgusted but it is more likely to happen to people who have an inheritable condition themselves. And through embryo screening they can prevent that happening and save a child the burden of having that condition. That's all people are trying to say (I think). I certainly didn't see anyone on this thread calling people rejects.