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.