Wednesday, February 9, 2011

Savior Siblings

I saw an article yesterday about France, I think. Hang on. *runs off to google* Yep. I saw the article yesterday, though I guess it came out on the seventh about France having it's first 'savior sibling'. Which led me to toddle around the net looking the concept up.

Basically, what happens is that a child is born who winds up having a fatal disease, typically a form of cancer from what I've read, which can best be treated by a 'hematopoietic stem cell transplantation'. 'Hematopoietic' means the formation of blood cells in a living body. So the most effective treatment for the disease would be the transplant of uninfected matching stem cells (or an organ) into the child's body.

Where do they get these genetically compatible cells or organs? Well, that's the thing. It's hard to find compatible matches in the real world, apparently. The best chance is a parent, sibling or other relative. But given the genetic dice roll, there's no guarantee that a match will occur naturally. And then you're left with the world wide population of people who are willing donors. *holds fingers a tiny little bit apart* The chances seem to get smaller and smaller.

So what some people have done is to produce, on purpose, a child who is both a genetically compatible match to the afflicted child and free from the disease so that their cells/organ can be used to save the life (hopefully) of the first child. They do this by IVF, testing each zygote for compatibility and then only implanting a zygote that matches.

The procedure is, unsurprisingly, controversial.

1) What is done with the zygotes that are rejected? A zygote is a fertilized egg, and under certain views is a person at that point. The destruction of the zygotes, whether deliberate or simply through allowing them to remain frozen until their viability is passed (I don't know how long that would take or even if it happens. It's merely speculation.) would be the killing of a child, like abortion.

2) Genetic selection = eugenics. Yes, the use of it is meant to be a saving thing in this case. Lots of really horrible things start life out as a good idea. Something meant to benefit humanity. We already have cultures and people who 'select' for gender, typically to the detriment of female children. I've heard talk of 'designer babies' - where the baby is chosen on the genetic level for certain desired traits. Male,  green eyes, dark brown hair, no baldness, etc. etc. etc.

3) Is it right to create a child for the sole purpose and benefit of another child? What about the care and affection for the savior sibling? The right to their own life, not as a useful extension of the first child, but in their own right? I'm not saying that the parents of such children view them as 'spare parts', of course. I can't imagine anyone doing that. I'm just throwing out the ethical issue that I've seen raised.

There's a book by Jodi Picoult on this topic called, My Sister's Keeper. I haven't read it, or seen the movie, but I do intend to pick the book up and read it. I love Picoult, but I have to space her out. She writes 'real life' works, not monsters and aliens, which is my usual fair. And her subject matter and the skill with which she writes makes them all heart wrenching. So I have to pace myself with her.

Thoughts? Have I missed something?


  1. I'm interested in others' points of view. I know mine are narrow-minded on this topic because I think God is the creator of life and I don't go for manipulating it in this fashion. But maybe I have a huge blind spot in this area and others can convince me.

  2. *pokes you* Since you may well be the only commenter, expound on your point of view! Don't make me get the pointy stick!

  3. it is all rather Gatica the film with Jude law in it and ethan Hawke.

    if we are all in the end to be chosen in this way... where does it end. I think I have said it before.

    where would all the 'unique' people be. the woman will all be blond. as you said all the men will be 6'2 well built dark haired etc.

    there will be no room for people like stephen Hawking, Michael J fox etc the world will be a boring place.

    I saw a 'cop' programme whilst in Scotland visiting family (I do not watch these programmes as the make me unable to sleep). anyways, a girls body was found and it was made to look like she had been snatch or something.

    but really her family had accidentally killed her, whilst filling her with drugs to harvest her organs or bone marrow for her elder brother. her brother had had different types of cancer and organ failure.

    Anyways it showed that the savior sibling, lived only for that purpose.

    As a childless couple, we would love any child sent to us. and I can not imagine the pain a parent must go through to get to the point where they think this is their only option.

    but, I could not do it. condemn a child to a life knowing the only reason they exist is to save their sibling? the phsycological damage of always thinking the other sibling is better, more wanted. gosh what a mine field.

    But to see your child die? I couldnt imagine it. I really couldnt...

  4. What an interesting post.
    It's so hard to have an opinion on matters like this if you have never come to face them personally and make decisions. But sometimes, even when one means to be as condescending as possible - especially when someone else's suffering is taken into account, the ethical gaps are just too obvious.
    I think that there's a lot of ignoring facts in this process. Of trying to skip reality and consequences and guilt and human rights and uniqueness of each human being and lots of similar things, just to make something right. To fix a painful reality, one creates a whole bunch of new painful realities.
    I can sympathize with that and i can hardly "state my opinion" without second thoughts and doubts because i realise how devastatingly hard it is to hold on to what's right (and to God's commandments for that part) when you are in pain.
    I watch myself strive with that everyday. Sticking to what is God's way when it looks like i've arrived at a dead end, when doing what's wrong (sin) seems like the only way out. And to trust Him still, trust that His will is the Perfect one, trust that He will provide despite the "dead end" that is before me, and i think that is what faith is all about... But it is hard, and even harder for anyone who has no personal experience of God's "credibility". I mean, if you make such attempts and trust Him despite everything you will see His hand in your life and then it becomes easier to trust again at the next "dead end". But in the beginning it is HARD.....(blah, blah, blah)

    ps. I really enjoyed the "Gospel of Mary" series...

  5. Slice,

    It is. There've been plenty of scifi works done with genetic selection and how it all goes very very wrong.

    It's one of those things that starts out meaning well, but the potential for abuse is so great I just don't think that it's worth it. Which is a horrible thing to say, probably, in light of any family whose child is suffering.

    That's it exactly. Some of the greatest people, the most brilliant minds wouldn't have existed if this was policy. Terrible.

    *blink* Was that a true crime show or a cop show like Law & Order or CSI?

    It's a terrible thing to have to contemplate.

    Would the savior sibling necessarily simply exist for the sake of the first child? Couldn't the parents love the child for itself as well? But then, I think, you have the problem of them being willing to take pieces from the savior sibling to take care of the first child. However, if both children had just been born naturally and the second child happened to match the first, wouldn't they still be willing to take from the healthy child to save the ill one?

  6. Athena,

    It's true that we're all talking from the peanut gallery on this and I think we're all grateful for that fact. No one wants to be in the position where these are the choices that they have.

    I think that there's a lot of ignoring facts in this process. Of trying to skip reality and consequences and guilt and human rights and uniqueness of each human being and lots of similar things, just to make something right. To fix a painful reality, one creates a whole bunch of new painful realities.

    I think that sums up all the problems with this process very well. In trying to fix one horrible situation a dozen more are created. I don't believe that there is a 'winning' scenario here.

    Yes. Everything that you said is true. And it doesn't make anything any easier. In a situation like these, there is no good answer. Any path you take is going to cause pain to someone. And for those who have faith it would be a heavy trial of that faith. The point where you start question why, why God would do this to you, to your child. What does He want from you? Can you bargain with Him? But in the midst of all that to be offered a chance, something that might work, might save your child at the expense of obeying God's laws? I can see where even if one is very strong in their faith, to be so tempted at such a low point where you've been emotionally battered it would be very hard to resist. But ultimately, and again I know I say this from the peanut gallery, where I've never had to make such a choice, I think that the only right way is to follow God and trust that whatever happens, no matter how much it hurts, is His will.

    ps. I really enjoyed the "Gospel of Mary" series...

    I'm glad. :) There's more coming. I'm not done with the book yet, I've just been lazy in posting!

  7. This is such an interesting topic, and also very sensitive.

    Definitely read My Sister's Keeper! I absolutely loved it! (But I really love Jodi Picoult).

    I think there's a big difference between testing existing siblings to see if they're a match, than bringing a child into the world purely for this purpose.

    Not only is it a question of will s/he be loved for themselves, or just seen as spare parts, but the child will also often have to go through several surgeries and medical procedures - is it fair to do this to a child that is itself healthy?

    On the other hand, I can't imagine what it would be like to watch your child die, knowing SOMETHING could be done to save him/her. And what if you already knew you wanted another child? I don't know. I don't personally think it should be legal, but I know it's already being done.

    The question is, we start here, but where do we end? I don't condone playing God.

  8. Becky,

    It's on my tbr list. The list is very long!

    There is a huge difference between testing children who exist for themselves, and making one for the express purpose of harvesting parts of them, no matter how small.

    I don't pretend to understand the pain that these parents go through, and I know I speak from the nice little ivory tower of not having to make such a decision, but I still feel that it's wrong on a basic fundamental level.

  9. Haha I know how you feel about having long lists of books to read! Mine is currently 10 pages in a word-doc! (and for some crazy reason it grows faster than I can keep up with it :P )

    "There is a huge difference between testing children who exist for themselves, and making one for the express purpose of harvesting parts of them, no matter how small."

    I agree with you completely on this, just trying to explain that it must be a horrible situation to be in.

  10. It's nuts, isn't it? The books multiply when we're not looking. It's the only answer. :)

    Oh, no, I completely agree that it's a horrible situation, and an impossible decision to be forced to make. I don't think that any parent who makes the decision one way or the other does it lightly. How could they?

  11. Yeah I know is crazy! (Though I guess technically, the books do multiply since there are new ones published every day...)

  12. Yes, yes, but how are they doing it on my shelves? I turn around and they've doubled!


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