Human Exceptionalism

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:

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.

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 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.”

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