Son, we love you, but you shouldn't exist...

[Saint Jade IV]

A couple in Australia who underwent IVF are now suing their IVF doctor.

The father has a genetic condition. The couple asked the IVF doctor about the risks, and he, rather than investigate, handed the couple the number of a hospital and advised them to get in touch with a genetic counselor, in reference to fertility.

The couple called once. When they couldn't get through, they didn't try.

Their son was born with the condition (which he had a 50% chance of getting from his father), and suffered a massive stroke that caused severe brain damage a few days after birth. Keeden will never walk, never talk, and never be able to use the toilet.

The parents have sued the IVF specialist for wrongful birth, claiming that had they been appropriately informed of the risks, they would not have chosen to go ahead.

As a result of Keeden's condition, both parents have been unable to work at their previous level, and have had to significantly modify their home, at their own expense.

Now, I get that there's always risks of disability when kids are born. But this couple specifically told the IVF specialist, and asked about the risks. I think he did fail in his duty of care, and that the parents should be compensated. I know that they could have followed up more, but they could also have dumped their son in care. I think they need some compensation.

[Der Teutoniker]

He referred them to a genetic specialist. They refused to seek that qualified opinion. It's their own fault

[The Alchemists Guild]

People are always looking for someone to blame when anything goes wrong, it would be nice if they ran around looking for someone to give a wad of cash to whenever something goes unexpectedly well.

[Neu Leonstein]

He referred them to a genetic specialist. They refused to seek that qualified opinion. It's their own fault

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

[Atlantica Novus]

He referred them to a genetic specialist. They refused to seek that qualified opinion. It's their own fault

People are always looking for someone to blame when anything goes wrong, it would be nice if they ran around looking for someone to give a wad of cash to whenever something goes unexpectedly well.

This ^

[Saint Jade IV]

He referred them to a genetic specialist. They refused to seek that qualified opinion. It's their own fault

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

My impression is that they were left with the impression from their IVF specialist that the genetic risks were negligible.

[Farnhamia]

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

My impression is that they were left with the impression from their IVF specialist that the genetic risks were negligible.

My impression is, they waited 11 years to sue? After calling the genetic counsellor exactly once and failing to get through? What was that conversation like? "The line's engaged, honey." "Well, no matter, I mean, what could go wrong?"

[Grave_n_idle]

A couple in Australia who underwent IVF are now suing their IVF doctor.

The father has a genetic condition. The couple asked the IVF doctor about the risks, and he, rather than investigate, handed the couple the number of a hospital and advised them to get in touch with a genetic counselor, in reference to fertility.

The couple called once. When they couldn't get through, they didn't try.

Their son was born with the condition (which he had a 50% chance of getting from his father), and suffered a massive stroke that caused severe brain damage a few days after birth. Keeden will never walk, never talk, and never be able to use the toilet.

The parents have sued the IVF specialist for wrongful birth, claiming that had they been appropriately informed of the risks, they would not have chosen to go ahead.

As a result of Keeden's condition, both parents have been unable to work at their previous level, and have had to significantly modify their home, at their own expense.

Now, I get that there's always risks of disability when kids are born. But this couple specifically told the IVF specialist, and asked about the risks. I think he did fail in his duty of care, and that the parents should be compensated. I know that they could have followed up more, but they could also have dumped their son in care. I think they need some compensation.

Is it the IVF doctor's responsibility? "Rather than investigate" rather suggests we're assuming that the responsibility lies with the IVF doctor, but I'm not sure how reasonable that assumption is. I rather suspect that a legal result finding the doctor at fault would set an unfortunate precedent, and IVF doctors will simply start refusing to do ANY treatments where there's ANY kind of inherited risk.

[Napkiraly]

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

My impression is that they were left with the impression from their IVF specialist that the genetic risks were negligible.

It doesn't seem like it. He referenced them to a genetic specialist because he probably didn't know the full risks, so doing the responsible thing he referred them to someone he knew would know. I don't see how the IVF specialist is at fault, he told hem to see a genetic specialist and they barely tried to see one. Their own fault and they should live up to it.

[Lackadaisical2]

It is not the first time the Wallers have been to court in relation to their son. In 2006, they launched an unsuccessful ''wrongful life'' case in the High Court on Keeden's behalf, in which he sought compensation for future loss of earnings and opportunity.

Their legal prospects certainly don't look bright considering that...

Sadly, a wiki search of the disease reveals that its (usually) a dominant gene. I suppose that wouldn't have existed in 2000. :/

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

My impression is that they were left with the impression from their IVF specialist that the genetic risks were negligible.

From what part of the article did you get that?

[Grave_n_idle]

Aye. I wouldn't necessarily expect an IVF specialist to keep up with the latest research on the inheritability of genetic diseases of varying obscurity. In a way, if I ask my GP whether I have a brain tumour, and he tells me to go see an oncologist and I don't, I wouldn't hold the GP accountable.

One could of course make a general argument that people should have specialist certification before they go and do the IVF...but that's a whole different can of (ethics) worms.

But that's from the description in the OP. These cases tend to be less obvious in practice.

My impression is that they were left with the impression from their IVF specialist that the genetic risks were negligible.

I don't have enough information to know if IVF doctors are supposed to be the goto resource, rather than seeking specialists in the related conditions - it seems to me that the IVF doctor would specialise in IVF, not necessarily be an expert in inherited conditions.

Indeed, I'm not even sure I'd want the IVF doctor to be the goto resource. IVF already veers dangerously close to eugenics in the public consciousness.

[Saint Jade IV]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

If your IVF doctor told you he didn't think it was anything to worry about, I'm sure that most people would trust them. Perhaps not people who actually understand these things on a deeper level.

[Grave_n_idle]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

If your IVF doctor told you he didn't think it was anything to worry about, I'm sure that most people would trust them. .

Did he say that?

[Farnhamia]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

If your IVF doctor told you he didn't think it was anything to worry about, I'm sure that most people would trust them. Perhaps not people who actually understand these things on a deeper level.

We don't know what the IVF doctor told them, do we? Did he actually say, "Yeah, I wouldn't worry about that. Here's a number for the counselor"?

And why did they wait 11 years to start the lawsuit?

[Samuraikoku]

I dare say that the parents are responsible for this more than the IFV doctor himself. Had I been in their position I wouldn't have gone with it unless I talked to the genetic specialist first.

[Napkiraly]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

If your IVF doctor told you he didn't think it was anything to worry about, I'm sure that most people would trust them. Perhaps not people who actually understand these things on a deeper level.

It says that they asked him about the condition during a fertility discussion hence why he gave them the number. If they were concerned about it and their doctor gave them a number to reach someone who specializes in that field, then they should'have realised he was implying to get it checked out. Also this is why you get a second opinion folks.

[Lackadaisical2]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

That point would likely be under contention by the defense.

It is alleged the note was given to the Wallers in the context of a discussion about fertility not genetics, and that the phone number was the main switchboard for the hospital rather than the counsellor's direct line.

Emphasis mine. In cases like this it often depends on who you're more willing to believe. To me, it doesn't make sense to send them to an expert on genetics in the general context of fertility. But maybe it did happen.

[Saint Jade IV]

Just to clarify, the article states that the number for the genetic counselor was provided in a general discussion about fertility, not about the risks of passing on genetic illnesses. That's what makes me think it's possible the IVF specialist left them with the impression that the risk was not worth investigating.

If your IVF doctor told you he didn't think it was anything to worry about, I'm sure that most people would trust them. .

Did he say that?

I guess that's something we will find out. It certainly seems that he wasn't terribly interested in investigating the condition. But at this stage, all we really have are impressions.

I personally feel sorry for this couple. I also understand why they are suing. Without the money, the standard of care they could provide Keeden is limited at best.

Some people seem to think that this is somehow denigrating disabled people, to suggest that this couple wouldn't have gone ahead had they known the risks. I disagree. This couple has actually done an amazing thing by not simply placing him into care and moving on.

[Grave_n_idle]

I guess that's something we will find out. It certainly seems that he wasn't terribly interested in investigating the condition.

Which might or might not be a bad thing. I'm not convinced such decisions are his responsibility.

Regardless, we shouldn't be assuming he told them not to worry, unless we've some reason to suspect it.

I personally feel sorry for this couple. I also understand why they are suing. Without the money, the standard of care they could provide Keeden is limited at best.

I feel sorry for them, too - but that doesn't mean it was the IVF doctor's fault, and we shouldn't confuse those two things.

Some people seem to think that this is somehow denigrating disabled people, to suggest that this couple wouldn't have gone ahead had they known the risks. I disagree.

"The parents have sued the IVF specialist for wrongful birth, claiming that had they been appropriately informed of the risks, they would not have chosen to go ahead."

[Saint Jade IV]

I guess that's something we will find out. It certainly seems that he wasn't terribly interested in investigating the condition.

Which might or might not be a bad thing. I'm not convinced such decisions are his responsibility.

Regardless, we shouldn't be assuming he told them not to worry, unless we've some reason to suspect it.

I personally feel sorry for this couple. I also understand why they are suing. Without the money, the standard of care they could provide Keeden is limited at best.

I feel sorry for them, too - but that doesn't mean it was the IVF doctor's fault, and we shouldn't confuse those two things.

Some people seem to think that this is somehow denigrating disabled people, to suggest that this couple wouldn't have gone ahead had they known the risks. I disagree.

"The parents have sued the IVF specialist for wrongful birth, claiming that had they been appropriately informed of the risks, they would not have chosen to go ahead."

How does it denigrate disabled people?

[Samuraikoku]

How does it denigrate disabled people?

I suppose that the fact that "we wouldn't have chosen to have a disabled child if we knew it" can be construed as denigrating.

[Saint Jade IV]

How does it denigrate disabled people?

I suppose that the fact that "we wouldn't have chosen to have a disabled child if we knew it" can be construed as denigrating.

Only by people who are oversensitive. The couple went through IVF. It's not like it was a natural conception, and they also said:

''We love Keeden now that he's here, but if we had the right information and the right options we wouldn't have gone ahead with the birth, not in the way we did,'' Mrs Waller said from her home in Kangaroo Valley yesterday.

''Had things been done right, Keeden would never have been here. He would never have to go through the suffering he goes through - the seizures and all.''

I think it's ridiculous to suggest that anyone would elect to have a disabled child, if they'd known there was a significant risk before getting pregnant. Maybe people who are crazy, or who don't care much about their kids, but most people's main concern is that their child is "healthy".

I think it's ridiculously oversensitive of people with disabilities to feel "upset" or "denigrated" that their parents would prefer that they were healthy.

[AiliailiA]

A couple in Australia who underwent IVF are now suing their IVF doctor.

The father has a genetic condition. The couple asked the IVF doctor about the risks, and he, rather than investigate, handed the couple the number of a hospital and advised them to get in touch with a genetic counselor, in reference to fertility.

The couple called once. When they couldn't get through, they didn't try.

Their son was born with the condition (which he had a 50% chance of getting from his father), and suffered a massive stroke that caused severe brain damage a few days after birth. Keeden will never walk, never talk, and never be able to use the toilet.

The parents have sued the IVF specialist for wrongful birth, claiming that had they been appropriately informed of the risks, they would not have chosen to go ahead.

As a result of Keeden's condition, both parents have been unable to work at their previous level, and have had to significantly modify their home, at their own expense.

Now, I get that there's always risks of disability when kids are born. But this couple specifically told the IVF specialist, and asked about the risks. I think he did fail in his duty of care, and that the parents should be compensated. I know that they could have followed up more, but they could also have dumped their son in care. I think they need some compensation.

I'd like them to have government support in raising their disabled child. Of course: the alternative, that they give up the child to adoption, has massive costs to government or to some adoptive parent (who would also be entitled to government support). All parents of disabled children should have generous support from government even if they knowingly brought a disabled child into the world.

But no, Saint Jade, I must disagree with you this time. Like most times, come to think of it. You're a nice person with some very nasty opinions.

NO. The IVF service provides fertility to otherwise infertile couples, and that is a huge benefit. I want the service to concentrate on that: providing fertility to couples wanting to have a child genetically based in both of them, who cannot do it by the old "plug-in-socket" method. Or even, providing fertility to single women who cannot otherwise conceive.

I do not want IVF services burdened beyond that, to provide genetic screening services which are not provided to "plug-in-socket" parents. The service's advice was absolutely correct: access some other service for that.

Those parents are looking for someone to blame, someone who would simply not be available for them to blame if they had conceived by the obvious method. "I called, but the phone was engaged so I gave up" just is NOT sufficient to evade responsibility for having a child with a 50% heritable condition that they wanted to avoid.

[AiliailiA]

I think it's ridiculous to suggest that anyone would elect to have a disabled child, if they'd known there was a significant risk before getting pregnant.

Prenatal genetic testing is a good thing. Abortion of fetuses with genetic conditions (or early fetal damage, eg fetal alcohol syndrome) which would lead to severe disability in the child ... is also a good thing. If the progenitors of that potential future child are up for raising a child, but not up for raising a severely disabled child, then I would certainly want them to abort that one and try again.

And yes, I can see how it would be better not to implant the fertilized egg in the first place. Genetic testing of an embryo/fetus is done at 12 weeks or later, and the decision to not go ahead with the pregnancy is unequivocally an Abortion at that stage. Pregnancy has already had a physical effect on the woman, and if they are determined to have a child and are having difficulty doing so (ie, are accessing IVF services) then they or just she, will know of the pregnancy and have some emotional investment in it. An abortion costs her or them at that stage, but it still is for the best if they are not prepared to raise a severely disabled child.

It would be nice if they (or just she) could avoid that and screen for disabilities at conception.

But that isn't the job of IVF services. It should be an entirely separate service, and perhaps it should also be taxpayer-funded (severe disability in born persons being a huge expense to the state) but they should be kept separate. Access to IVF should be primarily for those unable to conceive by "do it yourself". The further service of genetic screening should be equally available to all: ie, not available at all, available at cost, or available for free. I would prefer "available for free" but I realize that is controversial and NO WAY should IVF be jeopardized by that controversy.

[Sociobiology]

But this couple specifically told the IVF specialist, and asked about the risks. I think he did fail in his duty of care, and that the parents should be compensated.

NO he only failed in his duty IF he told them not to worry. If he said "I don't know here is the number of a specialist who would" it was their responsibility to use that information. You can't expect a doctor to know everything. Not to mention if they couldn't be bothered to follow up with a specialist when specifically told to contact him over something they were obviously concerned about, what makes them think they could handle a child?