How Far Should We Go in Permitting Creation of "Savior Siblings?"
One of the disturbing areas of biotechnology that deserves more scrutiny than it has heretofore received is the "savior sibling" concept. A savior sibling is created via IVF and tested prior to implantation to match the DNA of a born child with a disease that could benefit from tissue donation, such as bone marrow. The UK specifically permits this in the new embryo bill.
But how far does the savior sibling license go? An earlier version of an AP story sent to me on the matter described it this way:
The House of Commons also clarified laws which allow the screening of embryos so parents can produce babies with specific characteristics to help a diseased older sibling through tissue or organ donation.
Organ donation! So I looked up the AP story, and it is now changed. From the story:
I suspect the earlier story took a leap of logic too far based on the actual wording of the statute. (If any SHSers have the details, I would appreciate info.)The House of Commons also clarified laws that allow the screening of embryos to produce babies with suitable bone marrow or other material for transplant to sick siblings.
The UK legislation aside, this whole concept raises many important issues. Here are a few:
1. Consent. A child has no capacity to consent to being used as a tissue donor. And obtaining tissues or bone marrow carries risk, even if it is small. Organ donation would carry a huge risk, although I will bet that is not specifically permitted in the law. So, can the parents alone consent to expose one child to risk to save another child? What extent of risk should a savior sibling be forced to assume before the law says no? Should a court have to give consent before permitting a child to be put at risk and suffer discomfort to save the life of a sibling--I sure think so. What should the limitations be, if any?
2. What if the child isn't wanted other than as a donor? The few savior siblings born so far were also wanted by the family. But what if parents were not interested in the child except as a donor? What if they chose to give birth, obtain the tissue, and then give up the child for adoption? Or, what if they decided to implant, gestate and abort once the kind of tissues they wanted would be obtainable? Laws permitting unlimited choice for late term abortion wouldn't prevent such an atrocity, and personhood theory would find it perfectly acceptable because the fetus as a non person is an unter menchen.
3. Don't forget the embryos that don't make DNA muster are usually discarded. So, we see human life created for instrumental purposes and tossed like non conforming fruit if they don't meet the needs.
The savior sibling is the kind of issue that leads off ethical cliffs. It tugs at us powerfully to help save the life of a sick child. But it also openly instrumentalizes human life. Once we start down certain roads, there seem to be no logical way to say, "Here and no farther."
Labels: Savior Siblings. Limitations.
posted by Wesley J. Smith @ 8:25 AM
8 Comments
8 Comments:
If all embryos are implanted, and all pregnancies result in live babies (as far as one can control this), I don't really have a problem with this.
People have babies for all sorts of reasons.
"So, can the parents alone consent to expose one child to risk to save another child?" I think one should differentiate between for instance, umbilical cord blood and a kidney, but bone marrow falls on that continuum, I think closer to the cord blood side. Yes, I think the parents alone can consent to that for a minor child. JMHO.
laura: All embryos are not implanted, only one that has the right DNA makeup.
And you didn't address the issue if the baby is not wanted other than for the tissue donation.
I think your concept of a sliding scale is reasonable. Obviously using UBC blood stem cells is of no ethical concern since it is a discarded organ from birth. Bone marrow could lead to infection. Organ donation, obviously to potential death.
At what point do parents lose the right to decide on their own?
And don't think it will never happen. As we have shown here over the last several years, you cannot get ahead of them even in parody because they always catch up.
Don't you mean to 'if the child is unwanted' not if the child is 'not wanted'. Many children are the result of unwanted pregnancies and are therefore not wanted, but once born the parental love kicks in and the child is kept (adoptions are getting rarer).
Oh, and your German is lacking. The correct spelling is Untermenschen (with a capital letter, as all nouns generally start with a capital in German), and the grammatically correct form (singular) is Untermensch. All one word.
"laura: All embryos are not implanted, only one that has the right DNA makeup."
I know that some people who do IVF stipulate that all embryos will get their chance, and also that no more than two at a time will be transferred, to avoid reductions. For people who do that, and maybe transfer the correct embryo first, I still don't see a problem. For people who make more embryos than they want to use, they can still donate them. Making them and then discarding the ones that don't have the right DNA - well, I don't like that.
"And you didn't address the issue if the baby is not wanted other than for the tissue donation."
As Joshua says, "not wanted" isn't an absolute term. We already know that "not planned" is not equal to "not wanted". I suspect that people who love one child enough to go through all that to save its life aren't going to just absolutely not want its sibling. If they do not want it, there's always adoption. People are lined up to adopt healthy newborns.
Seriously, if I were making the rules, I'd define that spot on the continuum beyond which we won't go (can't do that now b/c I don't have the stats regarding complications) and also require that any embryo created get its chance regardless of whether it has the right DNA.
Laura, I don't think you understand what Wesley is describing: The Savior Sibling scenario involves deliberately *not* implanting embryos who are not qualified to be a "savior." The embryos are screened for those characteristics before implantation and discarded if they don't meet the criteria. That's just part of the scenario Wesley is addressing.
I also note, for what it's worth, that bone marrow transplant is evidently a fairly painful procedure.
Wesley says, "Don't forget the embryos that don't make DNA muster are usually discarded." I don't see where those embryos are inevitably discarded.
Fairly painful procedures are pretty common, actually. Circumcision is fairly painful, but it's done to little boys all the time. It carries risks of infection and so forth, too. Pain can usually be managed.
Temporary, manageable pain in one sib, to me, is outweighed by saving the life of another who would die without that transplant. Once again, this is just my opinion.
Laura, I'm not sure how that would work, biologically. For example, suppose that it was not possible to freeze the non-matching siblings after testing them. In that case, the only way to implant all of the is to implant them one at a time, bring them to birth if they successfully implant, unfreeze another, test it, and repeat. It might take several years to reach a savior sibling on that plan, by which time the child needing saving might be dead. Suppose, on the other hand, that it were possible to test all in vitro created embryos and freeze some after testing, implanting the one that has the potential to be a savior immediately and waiting on the rest. In that case one has at a minimum exposed the remaining siblings to the additional risks of freezing and unfreezing (and in in vitro it simply is the case that many embryos don't survive that process) because they didn't qualify as saviors and one was in a hurry to get a savior. That raises ethical problems in and of itself.
"It might take several years to reach a savior sibling on that plan, by which time the child needing saving might be dead."
True, but that wouldn't be a reason not to try. After all, the transplant from the sib might not be successful either.
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