Saviour Machines

Page 3.14 has a poll up now on the UK refusing to ban everyones favorite science experiments, MANIMALS! What 3.14 doesnt mention is that Parliament (is that what they call it?) debated another topic today I find equally creepy: Saviour Babies.

Even with todays genetic counseling and genetic testing, sometimes shit just happens, and kids are born with shitty, shitty terminal or life threatening diseases.

But on the plus side, with todays genetic counseling and genetic testing and in vitro fertilization, parents can choose an embryo that is a perfect HLA match for their sick child, have another baby thats healthy, and YAY! A perfect bone marrow donor, and two healthy kids!

… But isnt that creepy?

Having a second kid as an organ donor for the first? Cord blood is nothing, but bone marrow donations hurt… and what about future ‘expectations’? Kidney donations? Lung donations? What will be expected of ‘saviour machines’?

And what if there is a mistake? What if the chosen child isnt a perfect match?

THIS is fun bioethics!

Not ‘*squeeee* An embryos a huuuuuuuman! *squik*’

Comments

#1 Ron
May 19, 2008

Creepy? As in ‘walking around with someone else’s heart’ icky creepy that will go away, or as in something actually unethical?

The decision to have another child can be for any silly reason whatsoever, from wanting an heir and a spare to hoping it would save your marriage. Saving another child’s life doesn’t seem like a bad reason right off, and probably better than most.

Now if I had another child that was a perfect match for me, and my failing heart…
#2 William Wallace
May 19, 2008

Genetic counseling is creepy.
#3 mcmillan
May 19, 2008

Anybody heard of My Sister’s Keeper which is on this topic. I haven’t read it myself though a friend has told me it was pretty good.

I don’t think I’d really have a problem if someone were going to use in vitro fertilization were to use genetic testing to make sure a kid would be compatible with another, but I’m less comfortable with creating a kid for this purpose. Though I’m not sure I can really differentiate that from other bad reasons people reproduce.
#4 OmegaMom
May 19, 2008

Having been on infertility lists for quite a while, I have run into a few folks who did, indeed, “create” another baby via IVF/PGD that was deliberately chosen to be a match for an older child with a problem.

The ones I know were over the moon in love with the new babies and never considered them “savior machines”, there only for one purpose.
#5 OmegaMom
May 19, 2008

Which is not to say, of course, that it ends up that way with everyone, because there are some pretty shitty people out there. Just a few data points on the other point of view, that’s all…
#6 Joshua Zelinsky
May 20, 2008

I’m puzzled by why people think that savior babies are an issue. If the parents decided “ok, kid #1 is unlikely to survive to adulthood, let’s have kid #2 while we can now” I doubt anyone would object. Once they are doing that, choosing kid #2 to be able to help kid #1 seems fine.

Even if there was no prior intention to have kid #2, I fail to see the issue other than some sort of emotional revulsion which I feel but don’t find logically relevant. I doubt that any parents would be at all likely to treat #2 poorly simply because they didn’t initially intend to have that child. Any parents who acted that way would likely treat #1 very poorly. And if this isn’t by itself enough of a reason to ban all fertility treatments due to concern of creating bad parents then I don’t see why it would matter here.

It may also be because I’m come from a very Jewish background but I have trouble in general seeing ethical considerations (short of murder) preventing one from taking actions to save a life.
#7 Bob O'H
May 20, 2008

According to the World Service this morning, the bill only allows umbilical tissue to be used, not other organs.

Isn’t it great when politicians decide to do something sensible (aside from inventing The Leigh Prognosticator)?
#8 Stephen Wells
May 20, 2008

I was seriously worried during the debates, on the news all these waffly idiots kept popping up and saying that hybrid embryos were morally wrong because, er, well they never did say why, I think it had something to do with them not following a set of rules from the Bronze age. Even the radio announcers were using that “human-animal hybrid” phrase, which tended to make me bang on the steering wheel and mutter darkly about misuse of language. People who haven’t grasped that humans are members of the set “animals” shouldn’t be allowed to participate when the grown-ups are talking.

Fortunately I heard this morning that the amendments were defeated and science marches on.
#9 Jason Dick
May 20, 2008

Seriously, I think we’re going to go for full-on genetic modification within a few decades. “Want that gene that began in population X that will make your child resistant to heart disease? We’ll splice that in for ya!” I don’t think there’s any question that it will happen, there’s only a question as to how we’re going to deal with it, and it won’t be easy.
#10 SteveWH
May 20, 2008

I don’t think that there is in principle a moral problem with selecting an embryo because it is genetically a match for an older sibling with a problem. In practice, though, I’m skeptical that the ethical burden can be met. A lot will depend on how well-informed the parents are on the science, the ethics, the risks, and the probability of success. A lot will also be determined by the the risks and probability of success themselves.

One complication is that this kind of decision significantly affects another person, who does not have any say in the decision making process. While parents are typically the spokespersons for their children when those children are minors, it’s not clear in these cases that parents are in a position to make a decision that is in the second child’s best interests. Having the child and waiting for her input is also problematic, because the circumstances are far too coercive. I don’t see any good way of ethically following through on this in practice.

As far as the law and bioethics are concerned, generally, no ban on X can take all of these different factors and variations, which is necessary for moral decision making. Since I tend to think there are enough cases where going ahead with the controversial action would or could be morally acceptable and beneficial to those involved, I am generally against all-out bans on things.

Funny, there are genetic counselors for matters like these, but I’ve never heard of ethical counselors (clergy don’t count).
#11 scd
May 20, 2008

This is straight from the 2005 movie The Island. They grow clones of people so that if something happens, the organs can be harvested. Check the movie out, it was pretty good!
#12 tony
May 20, 2008

This is straight from most of 60′s Science Fiction – I think almost every ‘major author’ other used the trope at some point…

regardless – like most ethical conundra, this is very much shades of grey: and it will be individual decisions that determine the true ethics of each situation. As one poster alludes to above, is the second child just an ‘organ farm’ or a child in it’s own right? If the latter, then what is the position when saving the first child is potentially life threatening to the second?

I am truly happy to see the debate – and for the debate to be informed by science and ethics, not religion.

FWIW – IANABE (I am not a Bio Ethicist)

Tony
#13 Stephen Wells
May 20, 2008

The “saviour sibling” proposition involves e.g. the possibility of storing the sibling’s cord blood. nobody is proposing harvesting childrens’ organs, for the love of strawmen, the second child’s life is not threatened!
#14 mike the bike
May 20, 2008

“Not ‘*squeeee* An embryos a huuuuuuuman! *squik*’”

Could someone explain ‘squeeee’ and ‘squik’ to me?
I’ve read Abbie using them before but I don’t get it.
#15 Stephen Wells
May 20, 2008

Squeeee = sound of emotional excitement, emitted by e.g. teenage girl meeting the Beatles.

Squik = you really don’t want to know.
#16 Sili
May 20, 2008

Given the current state of the Beatles*, I doubt the reaction would be “squee”. More like “ARRRRRRRRGHHHH!! Dear FUCK! Get them away from me!”

I, too, was happy to see reason prevail (though I gather they’re not done discussion the abortion limit yet). Not least after the MRC came out with their odd odd brand of nuckfuttery.

That said, my opinion on IVF for lesbians have turned 180° recently, when it was discussed here in Denmark. I’m now ag’in it. BUT that’s because I’ve decided that I just can’t see getting genetically related kids as a human right in this day and age, so I now oppose NHS funding to all IVF treatment. If people are that desperate for a kid ‘of their own’ instead of adopting, then they can bloody well pay for it themselves.

*decomposing.
#17 Felstatsu
May 20, 2008

So basically the question is, how far can we take the treatment of child 1 before it becomes unethical to use child 2? (being male myself I’ll be assuming a pair of brothers for my writing, cause well, I’m lazy and the technically correct gender in English for these situations is male)

I personally don’t think anything more painful or harmful that transferring some blood should be allowed without child 2′s informed consent, so something like a marrow transplant would be off limits till the child could show he knows what’ll be done, how much it will hurt, how it will affect his own life and the life of his brother, why it is being done. I would expect the works before qualifying him as informed enough to make a proper decision and I imagine it wouldn’t be possible before the child was at least in their teens.

For Joshua Zelinsky, the issue is without laws in place what would unethical people wind up doing with these savior babies? They might not even be actively evil people who are undeserving of having children at all, perhaps the thought of losing their natural child has caused them to not exactly think straight and devalues their planned and genetically tested baby. It could be subconscious too, where they don’t even realize what they’re doing, but still lowers the quality of life tremendously for their second child until the time for a risky operation that could wind up killing the second child if it goes wrong.

Emotions can often make us act inappropriately without even realizing it so it doesn’t take a monster to mistreat a second child when the possibility of losing the first is weighing heavy on your mind.

@ Sili,

Could you explain your stance on IVF more? I fully agree that it would be better for couples to adopt, but I also find blood relations important enough that I don’t think someone should be denied the opportunity to have a kid though IVF (or any other *only way* option for the couple) simply because it’s too expensive.
#18 Texas Reader
May 20, 2008

I’m with Sili. Given that we live in an age when life-saving medical care is rationed here in the U.S. and surgeries are delayed in countries with nationalized health care, I don’t think single payer or government programs should be paying for IVF. Its clearly a luxury, like cosmetic surgery, that should not take up dollars that could be better used.

Now, if there was an IVF requested to produce a sibling who could donate stem cells or marrow to a needy sibling, I’d reconsider my stance.
#19 Sili
May 20, 2008

Felstatsu,

Pretty much what Texas Reader said.

I simply don’t find blood relations important enough to justify the general taxpaying public paying for IVF treatments. There’re more than enough people in the world as it is, and parents can mold the mind of kid even if it’s not related to them by blood. Love and instruction is the more important part – nurture over nature, if you like.

No, I’m not advocating outlawing IVF, but like TR I rate it as (non-reconstructive) plastic surgery. A luxury to paid for by the individual.
#20 Felstatsu
May 20, 2008

Ok, to play the devils advocate, how about some place where health care isn’t rationed and everyone can get treatment who does need it? If there’s spare money, such that people can even get assistance with cosmetically related surgeries, orphans et all are well cared for already, is there any reason to deny IVF aid to people who desperately want to raise someone who is of their own flesh and blood but can’t afford it on their own?

I’ll fully admit that such a world is pure fantasy at least for now, but if we manage to create such a world, do you still hold those views?

I’ll even concede that blood is what you make of it, in a nurture vs nature setting, as I agree well enough with it. I however know people who just don’t see it that way and find it important to raise a child born of their flesh and blood. In the idea of everyone being able to pursue happiness I think they should be given that chance still, especially since someone with that mind set, as irrational as it may seem to you or I regardless, will not make a good adoptive parent denying at least 2 people of their happiness.
#21 Sili
May 20, 2008

Oh, I do fully realise that it’s not a very nice or friendly view to hold (and it should be fairly obvious that I’m not a parent, nor to my knowledge have any acquaintances conceived by IVF).

In your ideal world of unlimited ressources (including natural ressources), I can’t see any objections just off the top of my head.

But as it is, even if there wasn’t the monetary issue of limited healthcare funds (I’m sure that the multilayered bureacratic monster that we currently have here in Denmark most likely waste far more time and money than IVF does), we’re pretty much headed for Malthusian catastrophe. While I do realise that the next ‘logical’ step is one-child policies and forced sterilisations, I, like most moderately empathetic people, reject those options – for the time being. I do think, though, that public funds would be better spent encouraging people to have less kids, than on bringing a few more of them into the world.
#22 NickG
May 21, 2008

“I personally don’t think anything more painful or harmful that transferring some blood should be allowed without child 2′s informed consent, so something like a marrow transplant would be off limits till the child could show he knows what’ll be done, how much it will hurt, how it will affect his own life and the life of his brother, why it is being done.”

Felstatsu, what would you say to the following then? Identical twin boys are born. At age five, one develops a cancer for which the only curative treatment involves a BMT. There is no other available donor because the boys belong to a racial minority that historically is unrepresented in donor pools and no other relative is a match. The healthy twin is obviously a perfect match.

Now, do you let the twin with cancer die waiting for the healthy twin to reach the age at which he can consent? Or do you perform what can be made (with good conscious sedation) into a relatively painless procedure on the healthy twin to save his brother’s life. (And I say this as an ER doctor who does painful procedures on kids not infrequently. I am told often that my lumbar punctures hurt less than the IV start. Any procedure with enough time and effort can be made nearly painless for kids (or wiener adults).)

With kids there is the concept that parents can give surrogate consent, but you also have to ask what would the child most likely want based on what a reasonable and prudent person would choose once they reach the age of majority? I know that if the life of any of my siblings were on the line I would shove the trochar in my own iliac crest without a local anesthetic if need be. And I think its reasonable to assume that 99% of people would consent to this (with analgesia) if it were a lifesaving therapy for a sibling. (And many would probably do it for a stranger. Which you should – especially if you are from a racial minority group that is unrepresented in donor lists! All it takes is a vial of blood!)

In this case, the only difference is the donor was selected for after the sick child became ill. If it were me and I were the Savior Baby, I would think it were a fair trade if nothing else. My brother got my BMT and I was given life due to his need. Not a bad trade all in all.
#23 Felstatsu
May 21, 2008

Hmm… twins is a bit different from the savior baby, and problematic factors such as there being no other possible donors weren’t something on my mind in my original post.

The main reason for my expressed view would be to remove any way for the parents to subconsciously undervalue the life of child 2. I kind of took it to an extreme stance to make a point about my distaste for making someone solely to cure someone else, especially if it would involve a painful or risky operation, I’m not actually against using a child relative if it’s the absolute only option, such as in your example, but I do think all other possible donors and treatments should be considered before taking a kid and harvesting marrow or other donate-able things from him. If genetic engineering was allowed to progress and let us harvest such things from modified animals I’d rather see that used than a savior baby. I can deal with the idea of using a cloned and genetically engineered mouse much easier than the idea of a gene-controlled human child.

I suppose I should’ve tempered my words a bit more, as I really didn’t mean such a hard line approach to the topic, I just really don’t like/approve of the idea of a baby being born solely to provide blood, marrow, spare kidney, etc to another person. I think every child should be born first and foremost because they are wanted by the parents as someone to love and raise, not for the main reason of being a donor bank to their older sibling.
#24 John C. Welch
May 21, 2008

Is it weird that CSI had this in reruns last night?