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Walker Brown, who has CFC syndrome, smiles while in a special-education class at William Dunbar Public School in Pickering on Nov. 5, 2007. (Peter Power/Peter Power/The Globe and Mail)
Walker Brown, who has CFC syndrome, smiles while in a special-education class at William Dunbar Public School in Pickering on Nov. 5, 2007. (Peter Power/Peter Power/The Globe and Mail)

Ian Brown

I'm glad I never had to decide whether my strange, lonely boy ought to exist Add to ...

And couples who buy donor eggs and sperm from commercial fertility clinics can now select for hair colour, ethnicity, temperament, athleticism and intellectual prowess – even for the length of the donor's eyelashes. If you think that's creepy, recall that at the beginning of the 20th century, cosmetic surgery was considered creepy too.

We do these things not just because we need to, but because we can. Ethics follow technology, not the other way around.

Of course, there are more humane and significant uses for the new tests. Duchenne muscular dystrophy afflicts only boys, and a test can accurately identify the genders of potential candidates and evade the burden of a troubled life. Fetal-DNA researchers are reportedly close to marketing a cheap, accurate blood test for Down syndrome (which 800,000 people in North America live with); similar screens will soon identify even more serious genetic diseases in utero, such as cystic fibrosis (70,000 people worldwide) and sickle-cell anemia (20 per cent of the sub-Saharan population).

Geneticists even predict the imminent arrival of the holy grail of the medical testing business, “the $1,000 genome” – the (fairly) cheap sequencing of all the most important exons (nucleic-acid sequences) in a fetus's DNA.

That will vastly expand would-be parents' understanding of the sicknesses their fetus is heir to (provided geneticists can figure out how to read the data – there are, after all, 4,000 known single-gene diseases), and increase the odds they will take abortive action if a serious syndrome is revealed, thereby avoiding a great deal of pain and trouble and medical expense. Danish newspapers have predicted a Down-syndrome-free society by 2030.

Needless to say, there are a lot of people who find this revolution in genetic choice alarming and inhuman. Margaret Somerville, the well-known medical ethicist at McGill University, recently lambasted the prospect of widespread prenatal testing as a symptom of our diminished respect for human life. She called it nothing short of a “search and destroy” mission to wipe out disabled people.

But Dr. Somerville is an ethicist. The geneticists I know keep clear of the ethical debate. David Chitayat, a clinical pediatrician and geneticist at Toronto's Hospital for Sick Children, thinks Dr. Somerville is talking nonsense.

“We're not doing screening to eliminate Down syndrome,” Dr. Chitayat explained rather testily the other day, when I phoned to see if he could help me sort out my complicated feelings. No amount of screening, he points out, will eliminate the genes that cause Down syndrome. But he stoutly defends the right of parents to a choice in the matter.

In his view, the value of all life, even the life of the disabled, is counterweighed by the downside of any serious genetic syndrome – the physical toll it takes on the child and the family, the cataclysmic lack of government funding for lodging and care, and the isolation and parental guilt a serious syndrome causes.

“Dr. Somerville can do what she wants,” he said, “but the decision to screen and to act is an individual decision. Let's say this is true – that severely disabled people teach us something. That is one thing. But to tell someone this is what they have to do because they cannot screen, that they have to have a disabled child? Does she know how many husbands leave when a disabled child is born into a family? Or what the impact is on other children? It's an individual decision in the context of the family about what is good and what's bad. The family decides.”

“Would you have taken the test and had an abortion,” I once asked my wife, “if there had been one?” It was his loneliness I couldn't bear, the boy's own sad sense of how different he was. Somehow he knew that.

“If there had been a test when I was pregnant that revealed what Walker's life would have been like, I would have had the abortion.”

“But then you wouldn't have had Walker,” I said.

Suddenly Johanna began to move around the kitchen a little faster. “You can't say that after I've known Walker – would I have done something to get rid of him? It's one thing to abort an anonymous fetus. It's another to murder Walker. A fetus wouldn't be Walker.”

“What do you think the world would be like without people like Walker?” I asked. It was an obnoxious thing to ask. “Without kids like him, I mean, kids who have real setbacks.” Fetal-DNA testing makes this more and more of a possibility.

I'll always remember her answer. “A world where there are only masters of the universe would be like Sparta,” she said. “It would not be a kind country. It would be a cruel place.”

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