Finding a savior in a sibling
Publish Date: 2006-04-17
This at last is bone of my bone and flesh of my flesh.
The paper reads, “‘Designer Baby’ clinic to charge ?6,000 a child.”
That’s a lot of money, even for an in-vitro fertilization (IVF) kid. The second sentence in the article explains, in a simple phrase, why: Savior siblings.
Savior siblings are not a new concept, and parents have been creating them for years.
Parents of sick children will, after all, go to great lengths to help their child, and savior siblings are children born in the hope that they will be genetic matches for a sick relative.
This option took on new life in 2000, when Adam Nash was born.
The Nash’s had a little girl with a disease that causes leukemia, and often death at a young age. Doctors theorized that cord blood from a donor would extend Molly’s life and prevent leukemia.
(Cord blood contains adult stem cells. The recipient is irradiated, killing his or her original bone marrow, and then infused with the blood. The stem cells migrate to the bone and begin creating new marrow.)
Molly’s parents underwent 4 rounds of IVF therapy combined with pre-implantation genetic diagnosis (PGD), ultimately creating 24 healthy embryos. Of those embryos, five were a match for Molly, and one implanted and was brought to term.
At Adam’s birth, the cord blood was collected; a short time later it was infused into Molly.
Today, Molly is an active sixth grader, thinks her younger brother is a pest, and adores her baby sister, Delaine.
Until now, Adam and the handful of other savior siblings have been a relative rarity. Most insurance companies will not cover IVF, let alone an IVF/PGD combination, and the out-of-pocket cost is staggering.
If the prospective parents can get around the cost hurdle, they still have to find a doctor, or a willing team of specialist doctors, to assist them. While many doctors have the expertise, the controversy around the practice has limited its availability.
This controversy is what brings designer-baby clinics to the news this week.
What, exactly, is that controversy?
First, people criticize the idea of savior siblings by saying that instead of each individual being an end unto themselves, savior siblings are used as a means to an end and that children should be wanted solely for being that child, not for being spare parts for another.
But the argument almost never stops at this admittedly valid concern.
Instead, it deviates.
It ceases to be about savior siblings, or even about a baser debate around IVF/PGD and whether it is an active form of eugenics.
The argument goes from what is possible to potential, from medicine and eliminating disease to a blonde-haired, blue-eyed, post-Nazi era, speculative fiction-fueled, designer-baby slippery slope.
This, inevitably, is where the debate circles and stops, going no further. That’s the shame in this whole mess.
Saying that creating babies that are free of a genetic disease, or are tissue matches for siblings, will lead to a genetically designed race of tall, blonde, buxom and blue-eyed babes who can all play the piano like Beethoven while writing like Austen is a non causa pro causa fallacy.
This sort of causal fallacy says that if A happens, then by a small series of indeterminable steps, Z will eventually happen and since they are tiny steps, we won’t be able to draw a line that should not be crossed.
And if Z shouldn’t happen, then neither should A.
The problem with this argument should be very clear: Anything has the potential to be used for ill.
What we should focus on is not the technology, but the people using it.
What we should focus on is not trying to stop medicine from preventing illness and curing disease, but making sure people are educated about the possibilities inherent in technology.
We should be discussing the idea of savior children and whether it’s okay for a human being to be created as a means to an end, or if those who’re so intentionally created have more thought gone into them than most.