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THE SUNDAY PROFILE : Genetic Testing: Can We Know Too Much? : UC Irvine Professor Foresees Ethical Dilemmas as It Becomes Easier to Predict Birth Defects, Behavioral Problems


To UC Irvine Prof. John J. Wasmuth, it is not speculation. It is a certainty.

Three years from now a woman who suspects she is pregnant will go to her physician for tests. The physician will scrape a few cells from the 10-week-old fetus and send them off for genetic analysis. It will be routine; the results will come back in only a few days.

The baby will be male. He will not have any of the more common, catastrophic birth defects. So far, so good.

He will be prone to colon cancer in midlife. That's good to know. We can watch for that and treat it.

And he will be 20 times more likely to be severely schizophrenic or psychotic before he's 20 years old. We can't say it will happen, only that it is much more likely to happen.

Does the woman abort?

This is social dynamite, and the fuse is already burning. Though genes that cause disease are being discovered, on average, about once a month, that rate will accelerate rapidly, Wasmuth says. Yet measures to prevent or treat these disorders will lag many years behind.

Although Wasmuth, a professor of biological chemistry, has worked more than a decade to discover or help discover these genetic defects and the simple tests to diagnose them, he says he knows that gene testing can lead-- will lead--parents into agonizing dilemmas.

* Aborting a child certain to die within a few months of birth may not seem a difficult decision to some, but what about a child with a 50-50 chance of a life made miserable by incurable disease?

* What about a healthy, mentally intact child who will suffer from society's prejudice? Dwarfism can be detected now in fetuses, and some researchers speculate that detecting the tendency toward homosexuality may be in store.

* More than diseases will be discerned from gene analysis. The genes controlling intelligence and body size will be discovered sooner or later. Will some parents abort children too small for football or too dim for college?

Wasmuth says he has seen the effects of such discoveries on others and on his own family.

After locating the gene that causes the most common form of dwarfism, he discovered a case in which a dwarf wanted his pregnant wife to be tested. If the child was not going to be a dwarf, the father wanted an abortion.

"He wanted a 'normal' child, and to him, a dwarf is normal," Wasmuth says. "This is just the other side of the coin. These are not simple issues."

And they are very emotional, too, as Wasmuth discovered when his daughter became pregnant last year. Early ultrasound tests showed something in the fetus that might indicate a mind-destroying defect. Gene tests would settle the question, and Wasmuth's daughter sought his advice.

Wasmuth, to his surprise, advised against testing.

"To anyone else, I'd have said: 'It's the smart thing to do. Have the test. You can rule out the disease, at least.

"But this was my daughter, and it was very scary," Wasmuth says. "I'd been doing this research for 15 or 20 years, and now it was like it brought my daughter down into my world. It was right in my face.

"My first inclination was, 'The chances of this happening are so slim, don't worry about it. Forget about it.' I admit, it was a backwards reaction on my part, but this was my daughter."

But his 28-year-old daughter, Michele Bones, a computer programming instructor, came from her home in San Diego to UCI for the gene tests, "and we had to wait for two weeks. She handled it better than I did; I was a basket case."

The tests proved negative, and Wasmuth's perfectly normal grandson was born in November. But he concedes that "this influenced me more than anything else."

Now, Wasmuth says, he's worried about how the discoveries he and other genetics researchers are making might be misused.

"Once you find the mutation that causes the genetic disorder and you put the information out there, people can use it any way they want, and I guess that's what bothers me. You hope it will be used to the benefit of everyone, but you know that certainly is not always going to be the case.

"We haven't been very good at long-range planning, have we? We had no idea of the implications of splitting the atom. Now we can have the information that would allow us to substitute our personal selection for natural selection.

"What should be tested for, and should we test everybody? If we test everybody, what disease do you eliminate through abortion and what disease do you sort of just let alone and say let natural evolution take its course? We may be really changing the evolution of the entire species in some way we don't understand. That's a little far-fetched in some cases, but I think in a lot of cases it's not out of the question."

Cystic fibrosis is a powerful example, Wasmuth says. The disease, produced when a child gets a defective gene from each parent, affects the lungs and is invariably fatal, usually before age 12.

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