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end of the cord blood banking debate
Jan. 3rd, 2005 04:50 pmEarly on I noticed all these ads pushing umbilical cord blood banking services. They struck me as kind of hard-sell ads, emotionally targeted, which turned me off, so I ignored them.
Recently, though, it caught my attention that blood cancers (leukemia, lymphoma) were at the top of the list of disorders for which they were promising miracle cures. Makes sense: the stem cells harvested from cord blood aren't universal stem cells that can differentiate into anything (as embryonic stem cells can); they are just stem cells for the blood cell and bone marrow lines. And growing new bone marrow is a fix for these problems. So I started looking into it. Way too late, of course-- they want you to sign up in the second trimester, and I have just days to go, so this would be logistically tricky to do at all.
It's astonishing that cord blood banking is as big an industry as it is. (I'm judging that it's large based on how many full-color full-page ads they can afford to put into every pregnancy and parenting magazine.) The chances of your child needing a transplant of their own cord blood is extremely small, and the service is quite expensive. Most people, given the choice between saving $2000 towards the kid's college tuition or spending that on cord blood banking, the expected value to the child of saving towards college is way higher.
(I used to think, if an idea seems obviously absurd yet millions of people adhere to it, then I ought to investigate it more deeply, because I must be missing what all those other people are seeing. For this reason I experimented with some stupid things, such as cigarettes and communism, as a young person, just to try to understand them OK, I understand them better for that, but they're still stupid. Since this last election, the life lesson I keep in mind is "59,000,000 people can be outrageously stupidly wrong at once!" and I'm more of a skeptic. This saves time, not having to stop and sniff under every ideological turd.)
But, if this service makes sense for anyone, it would make sense for my kid. It's not a question of choosing between saving towards college or cord blood banking-- you will hate me for this I'm sure, but I already have the college tuition money sitting around. And the chances of her getting any blood cancer is probably higher than average, based on family history-- lymphoma and leukemia in my family, and a case of leukemia in Sweetie's family I think.
Hmm. Expected value of deciding in favor: P * B - A
where
A = the cost of blood banking
P = the probability that autologous blood bank transplant is the only way to save the kid's life at some point
B = value of kid's life
Now, P is really, really small, but what do you put in for B? Most parents would say "infinite", but that way lies madness... right? With that kind of thinking, you have to buy every safety gizmo in existence to guard against the most remote possibilities of the freakiest accidents and diseases until you exhaust your resources. I mean, if you start looking at really low risks as infinitely aversive, you'd never get in a car, plane, train, or bicycle, and have no life. So we can't really base life's decisions on this equation.
Weird, the parent testimonials quoted by the cord blood banks. They don't give testimonials from parents who have actually made use of the banked cord blood to save someone in medically dire situations, because there have been so few cases of it actually coming in handy so far. Instead, the testimonials praise the cord blood banks for bringing them "peace of mind". Peace of mind??? Like these people were lying awake at night, worrying that someday their baby would develop leukemia, and NOT worrying about the 2,000 other things that are more likely to happen to their kid? What a strangely selective anxiety. Now, if banked cord blood were a cure for bicycle accidents, strep throat, child molesters, SIDS, and falling down the stairs, in addition to leukemia, I'd buy the service in a shot and enjoy peace of mind. But, it's not (nor will it be regardless of future miracles in stem cell research) so how is it that these people find "peace of mind" in this service? If you're that much of a worry-wart then parenthood does not go with peace of mind.
And yet, the pure geek value of being on the cutting edge of medical research if, god forbid, something did go wrong, seems tempting...
Researching the cord blood bank stuff further, I found some things troubling:
* Cord blood bank advertising does tend to gloss over the distinction between embryonic stem cells and hematopoietic stem cells, making cord blood sound much more exciting then it really is. Slimeballs.
* Getting a good sample of cord blood seems to be at odds with waiting for the cord to stop pulsing to clamp it. Some say it's better, healthier for the child, to wait to clamp the cord, and some poo-poo this idea. Consider that the American Academy of Pediatrics is concerned about the timing of cord clamping, and people who have a stake in the cord blood industry who are poo-pooing that. I think I know who to trust. The cord blood bankers' FAQs don't have anything reassuring to say about how their collection procedure impacts clamp timing. If they say anything at all about the procedure, they say "It's perfectly harmless... As soon as your baby is born, the cord will be clamped and cut... because, hey, it's just waste material otherwise!" I think this marketing is aimed at people who are ignorant of the cord clamping concern.
* If they don't get enough cells to do any good, either because the OB believes in not cutting the cord too soon or just by chance, would I still have to pay for the storage of a useless sample? I think so. What a waste of money that would be. Public cord blood banks, which collect cord blood for either transplant into any tissue-matched recipient or for research, routinely discard a large proportion of the samples they get because there are just too few cells. So we know this happens, often. It would be comforting if any of the private cord blood banks said "we'll refund your fee if the sample is bad." Alas, none of them say this. I think they happily store-- and charge for the storage of-- any sample they get, regardless of whether it's junk. I'm sure they are banking, hah-hah, on the hope that research will succeed in developing ways to make use of smaller numbers of cells, but if that doesn't pan out then a good sample is only useful for an autologous transplant when the kid is small, and a bad sample is no use at all.
* Most of the cases of successful use of cord blank aren't autologous transplants, I think; it seems that most are sibling-to-sibling transplants. If a disease has some genetic component to it, doctors would actually prefer a transplant from a relative, not from the patient themselves. But. I don't anticipate any siblings for this child. This makes the future usefulness really, really iffy.
Yeah, so, looking at the cord blood banks' marketing materials with these questions in mind, I feel like they are trying to slime me. There is some tiny chance that I'm turning down a really great opportunity by not going with the cord blood banking, but much more of a chance that the cord blood banks are as ethically sleazy as I suspect. Call me a Bad Parent if you will, but I have largely lost interest in flinging money that way.
Recently, though, it caught my attention that blood cancers (leukemia, lymphoma) were at the top of the list of disorders for which they were promising miracle cures. Makes sense: the stem cells harvested from cord blood aren't universal stem cells that can differentiate into anything (as embryonic stem cells can); they are just stem cells for the blood cell and bone marrow lines. And growing new bone marrow is a fix for these problems. So I started looking into it. Way too late, of course-- they want you to sign up in the second trimester, and I have just days to go, so this would be logistically tricky to do at all.
It's astonishing that cord blood banking is as big an industry as it is. (I'm judging that it's large based on how many full-color full-page ads they can afford to put into every pregnancy and parenting magazine.) The chances of your child needing a transplant of their own cord blood is extremely small, and the service is quite expensive. Most people, given the choice between saving $2000 towards the kid's college tuition or spending that on cord blood banking, the expected value to the child of saving towards college is way higher.
(I used to think, if an idea seems obviously absurd yet millions of people adhere to it, then I ought to investigate it more deeply, because I must be missing what all those other people are seeing. For this reason I experimented with some stupid things, such as cigarettes and communism, as a young person, just to try to understand them OK, I understand them better for that, but they're still stupid. Since this last election, the life lesson I keep in mind is "59,000,000 people can be outrageously stupidly wrong at once!" and I'm more of a skeptic. This saves time, not having to stop and sniff under every ideological turd.)
But, if this service makes sense for anyone, it would make sense for my kid. It's not a question of choosing between saving towards college or cord blood banking-- you will hate me for this I'm sure, but I already have the college tuition money sitting around. And the chances of her getting any blood cancer is probably higher than average, based on family history-- lymphoma and leukemia in my family, and a case of leukemia in Sweetie's family I think.
Hmm. Expected value of deciding in favor: P * B - A
where
A = the cost of blood banking
P = the probability that autologous blood bank transplant is the only way to save the kid's life at some point
B = value of kid's life
Now, P is really, really small, but what do you put in for B? Most parents would say "infinite", but that way lies madness... right? With that kind of thinking, you have to buy every safety gizmo in existence to guard against the most remote possibilities of the freakiest accidents and diseases until you exhaust your resources. I mean, if you start looking at really low risks as infinitely aversive, you'd never get in a car, plane, train, or bicycle, and have no life. So we can't really base life's decisions on this equation.
Weird, the parent testimonials quoted by the cord blood banks. They don't give testimonials from parents who have actually made use of the banked cord blood to save someone in medically dire situations, because there have been so few cases of it actually coming in handy so far. Instead, the testimonials praise the cord blood banks for bringing them "peace of mind". Peace of mind??? Like these people were lying awake at night, worrying that someday their baby would develop leukemia, and NOT worrying about the 2,000 other things that are more likely to happen to their kid? What a strangely selective anxiety. Now, if banked cord blood were a cure for bicycle accidents, strep throat, child molesters, SIDS, and falling down the stairs, in addition to leukemia, I'd buy the service in a shot and enjoy peace of mind. But, it's not (nor will it be regardless of future miracles in stem cell research) so how is it that these people find "peace of mind" in this service? If you're that much of a worry-wart then parenthood does not go with peace of mind.
And yet, the pure geek value of being on the cutting edge of medical research if, god forbid, something did go wrong, seems tempting...
Researching the cord blood bank stuff further, I found some things troubling:
* Cord blood bank advertising does tend to gloss over the distinction between embryonic stem cells and hematopoietic stem cells, making cord blood sound much more exciting then it really is. Slimeballs.
* Getting a good sample of cord blood seems to be at odds with waiting for the cord to stop pulsing to clamp it. Some say it's better, healthier for the child, to wait to clamp the cord, and some poo-poo this idea. Consider that the American Academy of Pediatrics is concerned about the timing of cord clamping, and people who have a stake in the cord blood industry who are poo-pooing that. I think I know who to trust. The cord blood bankers' FAQs don't have anything reassuring to say about how their collection procedure impacts clamp timing. If they say anything at all about the procedure, they say "It's perfectly harmless... As soon as your baby is born, the cord will be clamped and cut... because, hey, it's just waste material otherwise!" I think this marketing is aimed at people who are ignorant of the cord clamping concern.
* If they don't get enough cells to do any good, either because the OB believes in not cutting the cord too soon or just by chance, would I still have to pay for the storage of a useless sample? I think so. What a waste of money that would be. Public cord blood banks, which collect cord blood for either transplant into any tissue-matched recipient or for research, routinely discard a large proportion of the samples they get because there are just too few cells. So we know this happens, often. It would be comforting if any of the private cord blood banks said "we'll refund your fee if the sample is bad." Alas, none of them say this. I think they happily store-- and charge for the storage of-- any sample they get, regardless of whether it's junk. I'm sure they are banking, hah-hah, on the hope that research will succeed in developing ways to make use of smaller numbers of cells, but if that doesn't pan out then a good sample is only useful for an autologous transplant when the kid is small, and a bad sample is no use at all.
* Most of the cases of successful use of cord blank aren't autologous transplants, I think; it seems that most are sibling-to-sibling transplants. If a disease has some genetic component to it, doctors would actually prefer a transplant from a relative, not from the patient themselves. But. I don't anticipate any siblings for this child. This makes the future usefulness really, really iffy.
Yeah, so, looking at the cord blood banks' marketing materials with these questions in mind, I feel like they are trying to slime me. There is some tiny chance that I'm turning down a really great opportunity by not going with the cord blood banking, but much more of a chance that the cord blood banks are as ethically sleazy as I suspect. Call me a Bad Parent if you will, but I have largely lost interest in flinging money that way.
