For One Possible Answer…..

This picks up from yesterday’s post, which was basically a generalized consideration of where our ever-expanding capacity for genetic testing might lead us.  Here is one possible answer–drawn from a case being litigated in Australia.   I’d noticed this story when it was news (it’s over a month old now) but didn’t get to discuss it here.   Now seems like the right time.

Keeden Waller suffered severe brain damage following a stroke that occurred within days of his birth.  The stroke may have been caused by a blood disorder he inherited from his father.   (It appears to me that the causation question is one that is contested by the parties, though the second story I linked to states it as a fact.  If the stroke wasn’t caused by the blood disorder, the case will fail.)

Keeden was conceived via IVF and the fertility specialist who oversaw that process–Christopher James–is the defendant.   The critical assertion (apart from the causation one noted above) is that he didn’t tell the Wallers that there was a 50% chance that a child conceived using the father’s sperm would have the blood disorder in question.   Thus, the parents seek damages (the cost of caring for their disabled child) from the doctor.

There are some important things I don’t know/understand in this sequence of events.   It’s not clear to me whether the idea is that the doctor knew of the blood disorder (which I guess he might have done from either family history or genetic testing) or whether the assertion is that he should have known.   I think it is the former, but it isn’t hard to see that you could get a case with the latter–a case where the assertion is that the physician should have investigated the genetic fitness of the people involved or should have recognized a risk from family history.

Now it’s easy to say that this is just a single case (which it is) and it might even be a losing case (for several different reasons), but you can also think about the effect even a single losing case might have.   If you were an IVF doctor aware of this case, would it make you think differently about your actions when the next patients walk in the door?  Would you, for example, do more genetic testing, or at least recommend more genetic testing?   It seems like the way to protect yourself from claims like this would be to recommend as much testing as possible.  At the very least, you’d want to make patients aware of all possible genetic testing and all possible risks associated with anything that might be revealed by genetic testing.

Is this a bad thing?   Not necessarily.  If all that testing is out there and if there are potential risks, maybe people really ought to know it.  But you can see how this starts us down a road–the one I considered yesterday.   If you’re the potential parent(s), it might be hard to turn down the testing.   Then of course you’ll have information.  And what will you do with all that information?

One of the difficult things about the case here (it seems to me) is that it is very hard to quantify some of these risks.  Not, perhaps, the risk that the blood disorder would be transmitted–that looks straightforward–but the risk of serious consequences from the condition.  And that very difficulty will make it hard for some prospective parents to figure out what to do with the information.

This might be a circumstance where PIGD is advisable.  Indeed, wouldn’t you recommend it if you were a doctor, lest you be sued for having failed to recommend it?   It might be (and if it isn’t now, it might soon be) possible to determine which embryos carry the defective gene and which do not.   Then you could choose an unaffected one for transfer.

I cannot find what happened to this case in the end and if anyone else can, perhaps they can tell us.  But even not knowing the ending you can see how a single case like this might cause doctors and then patients to go a little further down the path I surveyed yesterday.

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8 responses to “For One Possible Answer…..

  1. Julie – I am for genetic testing especially in ART simply because you don’t have aquired knowledge of the family health history. If the hereditary disease is AT though I am not sure it would be on the list of genetic screenings as it looks like based on the numbers it would be considered a rare disease – sometimes those are not deemed worthy of being included.

    You state you don’t know about your history – liver cancer vs kidney cancer etc – but you know one of your close relatives died of cancer – etc. Even if it is vague knowledge you would be suspicious of someone in your family having kidney pain or stomach pains – the unconscious known history that triggers the concern. With ART and adoption you are blind. You don’t know what is normal because you don’t have that unconscious knowledge of what is normal. That applies to even developemental milestones and whether they are early or late – but it what lacks in these areas. You start to panic over anything because you don’t know what is normal. Hopefully that made sense. Being blindsided is really no fun.

    • It’s certainly true that I know more than nothing, which I think is what you are pointing out. But at the same time, it is pretty imperfect knowledge. There’s a lot I guess at. This is not to invalidate your point, but only to say that even those of us who know our family history have imperfect knowledge. I suppose the eventual promise of being able to read our genes is more perfect knowledge for all. I do wonder if this is something I should be looking forward to. But I don’t mean to discount the advantage that I do have in knowing general family health history.

      • A mother yourself Julie – I don’t know if your kids share genes or not but either way lets start with this…you have the same dentist or different ones? same pediatrician or different? same schools or different? do you apply knowledge that your gaining from dealing with one child to your dealings with the other and back and forth. If one gets the stomach flew you know your in for it because the other one will be sick just as this one gets better, etc etc. If they were genetically related and one developed something in his teens that was dismissed as unimportant then misdiagnosed just a little too long and he lost his eyesight or a limb over it (I’m going out on one now if you can’t tell), would you by virtue of having them see the same pediatrician be placing the other child at the best possible advantage to prevent the same thing from happening to her? Well what if someone somplace else was raising her as an only child and she got sick it took a while to figure out and she lost an eye ?
        Siblings raised together should have the best chance of health and survival provided they are not abused or neglected and thats illegal so lets set that aside,

        • I’m not sure where you’re going with this comment. Surely I do apply what I learn with one child as I face the other, but equally surely they are different children and I try to keep that in mind, too. I imagine that this is pretty typcial for anyone raising two kids. I think there are many advantages to having them see the same doctor–who is not a pediatrician but also happens to be my doctor. I accept that it is useful to have medical histories that include family histories. I also think they share many risk factors because they live in the same environment, for whatever that might be worth. Thus, if there is some toxin in our home or neighborhood, both are exposed to it. It’s all important.

          • My point is that if they were people that had a very large sibling group – say 5 or 20 or 150 then all of them under normal circumstances would be monitored by their common parent(s) at minimum, distributing and disseminating information to their respective uncommon parent(s). Ideally the common parent would have them all going to the same pediatrician so that information would not have to be “shared” to the extent it would have to across sub families. Ideally they should be going to the same pediatrician so that the doctor can be up on all of them, look for patterns that sort of thing, they should all be in the same school so that education and behavioral issues and extra curricular activities can flag for talents and early warning signs of problems. Ideally they’d all go to the same dentist and, and, and and and. When those 5 or 150 siblings are raised as if they are only children separately from their siblings they are operating at a distinct disadvantage over children raised with their other siblings or who are at least in constant communication with them through a common parent. A parent is suppose to oversee the care of all their offspring so that they are the recpository for all information about all of them. Itssad and tragic when that can’t happen do to acident or death or general unfitness. Its just dumb when it happens because its the master plan for family building. Leaves all those people like riding without a helmet.

            • The extent to which I disagree really has only a little to do with our topic here. I think sometimes siblings need different schools, say. Perhaps this goes back to the importance I place in shared genetics. Even if there are shared genetics, kids (in my view) deserve to be treated as individuals and that might lead to different placements, dentists, whatever.

  2. Keeden's father

    Hello, There is alot you dont know about this case for example the father of the child went for advice prior to the ivf and was given wrong advice from a haematologist. Was told the condition needed both parents to have it for any children to get condition, /////when infact only one parent needs to have it. And the ivf doctor was told of the condition and that the father suffered a dvt & pe which was nearly fatal . Armed with that information the ivf doctor gave the couple some (Proper medical referals for blood tests and the like and some ivf brochures & avery small unexplained stick it note with a phone number. The father rang the number once it rang out and he never got to ring it again as it really wasn’t given to him with any real explanation of what it was. Also it was never asked about by the ivf doctor or his staff again.. And the rest is history. Given the fact he has a blood clotting condition and suffered blood clots stroke at or after birth, One must draw from this if his condition didn’t have absoulutly nothing to do with the event Then i have been convinced pigs really do fly!!! I think a couple wanting to have a baby needing ivf should be able to decide as they are paying alot of money and may not fall pregnant easly weather they would like to find out all options available to them testing PGD , Sperm donor and the like. I am sure if the child grew up and at 20 had a dvt & pe and nearly died might well resent his parents if they knew they were ivf. Understand i hope you do. We let people decide all sorts of stuff when it comes to ivf Gay parents , Sex selection testing for less or equal risk conditions.

    • It is completely true that there is a great deal I (and the public generally) doesn’t know about the case. The things I do not know (and the things you assert) are critical to the outcome of this case.

      It’s also true that if the facts of the case are developed and if the case goes far enough in the legal system, it might well set some standards for how people involved in ART ought to behave, what rights prospective parents have, and so on. So for instance, if there are details that were known to the doctors and if a court concludes that the details are such that the doctors should have taken more aggressive action to advise the prospective parents of the risks their child might face, then liability might be imposed and the next set of doctors will know something about how the ought to behave. Even if the case isn’t quite so clear or doesn’t progress quite so far through the legal system, it can influence the way people behave in the next similar situation–that’s sort of the point I wanted to make here.

      I think it would be useful to have a discussion of what people contemplating IVF ought to be told about all sorts of risks, especially as our ability to do genetic testing advances. We also ought to be thinking about what kinds of testing ought to be required or at least routinely offered.

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