Dr. Steinberg's work in Tinsel Town means that he is well acquainted with such desires. “We get requests for all kinds of things. We had a pop star inquiring if her vocal abilities could be passed on to her children,” and elite athletes asking, “Do you think you could make it a tall boy?”
So when he went to a conference in 2009 and met scientists who had identified genes that influence eye, hair and skin colour in the people of Iceland, he assumed that his clients would be interested and struck a deal to offer tests for those genes. Then he posted the news on his clinic's website, and “the whole world went ballistic.”
Media converged from as far away as Europe, so many reporters and cameras that he couldn't get through the door. Television talk shows said folks would be able to customize their kids as they do their iPods.
Then the Vatican called. A soft-spoken papal executive said “he realized these things might be possible, that people might want these things,” Dr. Steinberg recalls. “‘But, please,' he asked, ‘can you just slow down?'”
Dr. Steinberg agreed to do so, but not before an article appeared in the Los Angeles Times by a Washington man who had tried to use PGD to produce a sibling to save his mortally ill son. Allen Goldberg called it a corruption to use the technology to test for cosmetic characteristics. “What I now fear,” he wrote, “is that ... trait selection to satisfy the whims of parents will turn people against a procedure that can save lives.”
The screening pioneer who had a change of heart
Last fall, not far from the Guadalajara clinic where Dr. Steinberg helps couples have children without disabilities, Canadian researcher Jeffrey Nisker was attending the 2011 Paralympics, cheering on a friend who was among the athletes.
Twenty years ago, Dr. Nisker also was a PGD pioneer helping to push the boundaries of the technology, but, unlike Dr. Steinberg, rather than slow down when ethics became a concern, he stopped altogether.
Working at the University of Western Ontario, he had come up with a method for extracting cells that allowed more embryos to survive PGD. With the help of a “huge grant,” he says, his clinic quickly became second only to the hospital where the procedure was born.
Then, he considered PGD a triumph – a way to have children without lethal diseases, while sparing pregnant women from amniocentesis, the genetic test that relies on the withdrawal of fetal cells and can trigger a miscarriage, as well as the prospect of an abortion.
“I was enamoured by the science,” Dr. Nisker says. “But, you know, I had never really thought about where it was going.”
That changed when news of his clinic's first PGD pregnancies hit the media. He was deluged with calls, but few came from couples eager to avoid diseases. Most wanted “to choose the sex of their children, to select for this or that,” he says.
Even more surprising: “Fifty-eight per cent of the calls were from fertile couples. I never thought for one minute this would be used by fertile couples.”
Before long, he says, “it was getting crazy … My friends would say: ‘Don't you see where this is going?' And they were absolutely right. I shut the lab and gave the money back.”
A year later, in 1994, his concerns and desire for public discussion led him to write Orchids, a provocative play in which a doctor lecturing medical students says: “In a perfect world, exploration of the ethical and social implications of genetic science should precede research … Without careful constraints, the rapid pace ... may be harmful.”
Today, he still hopes for a full public debate, worried that screening out genetic defects will create a cold, intolerant world like the one portrayed in Gattaca: “This is scary to me because I'm one who doesn't believe in social engineering. If we strive for perfection, we are going to blame people with disabilities. We're not going to accommodate them, or support them with tax dollars.”
Santiago Munné, a PGD pioneer in the United States, says advocates for the disabled understandably oppose the procedure since they are “fighting for resources to support these kids.” But “the ethics of doing PGD are much better than terminating a pregnancy. We're not doing that – we're just not transferring [into a woman's uterus]any embryos that have genetic diseases.”
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