Saving a 10-year-old’s life — but at what cost?

A researcher pulls a frozen vial of human embryonic stem cells at the University of Michigan Center for Human Embryonic Stem Cell Research Laboratory in Ann Arbor, Mich.
A researcher pulls a frozen vial of human embryonic stem cells at the University of Michigan Center for Human Embryonic Stem Cell Research Laboratory in Ann Arbor, Mich. THE CANADIAN PRESS/AP/Paul Sancya

I’m no Nostradamus. Neither was Nostradamus, come to think of it. But one doesn’t need to be to see how ethically icky, in the professional vernacular, the future of medicine is going to be.

To paraphrase Captain Kirk, our medical tools are growing faster than our wisdom. The future isn’t now, yet, but it’s closer than we realized. And almost certainly closer than we’re ready for.

Consider the case of the Al Sabbagh family. They recently arrived in Canada from Syria, with their children, including their son, Mohamad. Mohamad is 10 and suffers from idiopathic aplastic anemia, a rare condition. Mohamad has a severe case, and it would likely be fatal if untreated.

READ MORE: Could you save his life? Edmonton boy needs to find stem cell match

His illness has left his body incapable of producing blood cells necessary to remain healthy. According to a report in the CBC, he requires twice-weekly blood transfusions at the Hospital for Sick Children in Toronto. Even with those, his quality of life has absolutely been impacted.

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There’s a chance for Mohamad to live a healthy, normal life. A bone marrow transplant could restore his ability to produce the blood cells he needs. But the donor must be a very, very close match. Mohamad’s parents are not optimal donors, neither are his siblings. It’s also possible to seek a donor through public donor banks, but you want as close a genetic match as possible.

Canada’s Arab population is relatively small, and the number of those Canadian-Arabs who’ve put their information into a donor registry is even smaller. The odds for young Mohamad are long.

READ MORE: Quebec family hopes to raise awareness for patients in need with stem cell registry drive

That’s led his parents to consider a remarkable step. New embryos could be created, using in vitro fertilization techniques, using the genetic material of his parents. The embryos can then be genetically screened, with only the best match implanted into Mohamad’s mother for gestation and delivery. That baby could then be used to provide a potentially life-saving transplant of stem cells into Mohamad.

If all went well, Mohamad’s bone marrow would regenerate, curing his illness. The infant would not be endangered (the donor cells would be collected from the umbilical cord blood, not the infant’s body).

There are two equally valid ways of looking at this. Indeed, they should go hand-in-hand. As a father of two young children myself, I can’t fault the Al Sabbaghs for wanting to save their son, at any cost. If my children were suffering and this was the best chance to cure them, I wouldn’t hesitate to sign on whatever dotted lines were required. Adding a third child to our family would be a blessing. I confess to not consulting with my wife before writing that, so don’t blow my cover, but if that’s what it took, I know we’d be on board.

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READ MORE: Calgary boy meets stem cell donor who saved his life: ‘it’s a miracle’

But on the other hand, how can it not send chills down your spine to think of creating a human being purely to benefit someone else?

This is not a criticism of the Al Sabbaghs, nor of any other family that has previously conceived a so-called “saviour sibling.” I 100 per cent understand the urge to save the child you have. There’s no moral blame here. But good Lord, what a strange path we’re embarking on.

A few decades ago, this wouldn’t have been possible. The Al Sabbagh family would have had limited choices.

Bone marrow transplants have been around since the 1970s, but the ability to conceive multiple children, genetically screen them for compatibility and then bring specifically the best match to term, is much newer. It’s a small peek into a future we’re just arriving at.

READ MORE: ‘I need a man’: Ethnic donors desperately needed for bone marrow registry

Medical technology is advancing rapidly, and stem cells are a particularly promising field. But as we push these technological envelopes, we’re going to encounter tough moral dilemmas that we are not ready for. Indeed, we probably haven’t even thought of them yet.

I’m not a medical ethicist, nor an expert in the field of stem cells and transplantation. But one doesn’t need to be to wonder about the morality of creating a person to save another. Even if the saviour sibling lives a long, healthy and happy life, cherished by its parents and the brother it saved, you can’t help but wonder what psychological toll it would take knowing you were, at birth, essentially raw materials. And it’s also not too hard to envision a future where this treatment could be used more broadly, with new life being created simply to cure the injuries and illnesses of those already living.

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After all, why not? Don’t the needs of the sick and dying today take precedence over people who only exist in theory?

It seems wild now, like something out of science fiction. But our sci-fi daydreams have a habit of becoming reality. Are we ready for what this would mean? Are we prepared for a future where children can be conceived and harvested for parts? Would we feel better if the raw material babies were genetically tweaked in such a way that they never developed consciousness, and were therefore something less than human? Would it soothe our consciences to breed human tissue to serve just as spare parts if the bodies never grew a brain?

None of this matters much for Mohamad, a 10-year-old boy lucky enough to be born in a time and now live in a place where modern medical miracles make curing his brutal illness possible. And no one should judge the desperation of a mom and dad who just want their son to live a long, healthy, normal life.

But consider this a case study, a sample of the future. We are moving into new frontiers in leaps and bounds. I hope to hell we’re ready for the questions we’ll face once we’re there.

Matt Gurney is host of The Morning Show on Toronto’s Talk Radio AM640 and a columnist for Global News.


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