Oh Baby! Reproductive genetic technology is here

  • Ellen Goodman / Boston Globe columnist
  • Monday, October 9, 2000 9:00pm
  • Opinion

BOSTON — Any way you look at it, Adam Nash had to pass a very high admissions test for birth.

The boy was one of 15 embryonic contenders for his mother’s womb. He was chosen from the petri dish alternatives at eight cells old because he was a healthy "perfect match" for a desperately ill sister who needed a transplant of blood cells just to survive.

Adam Nash was, in short, conceived, implanted and born not just to be a son but to be a medical treatment.

The blood cells in the umbilical cord that connected this newborn to his mother were transplanted to his 6-year-old sister Molly. He was brought to life to save her life.

What are we to make of this creation for donation? Are Lisa and Jack Nash doubly blessed by the birth of a healthy son and, hopefully, the rebirth of a daughter? Absolutely. Is there any parent among us who wouldn’t go to the ends of the earth to save a child? Why not then go to the furthest end of the medical frontier? Why not push at the ethical edge?

This is not the first time that parents have taken a chance — bearing one child who could be a donor for another. But for the first time, the luck of the reproductive draw was replaced with absolute certainty.

The biography of Adam Nash is a composite of decades of reproductive wonders and genetic possibilities. In vitro fertilization was once mired in controversy over "test-tube babies." Now it is nearly routine. Genetic testing of embryos has become a new boon to parents whose fear of lethal genes might have prevented them from having children at all.

Until now, a child like Molly, born with Fanconi anemia, was likely to die by seven. But parents and doctors used every technique from IVF to genetic testing to pick a son with what his mother called, "the additional perk": the ability to save his sister’s life.

But the happy ending we wish for one family is just a beginning. This may turn out to be the easiest case on a long hard road. We are being led to that piece of terrain that ethicists always warn about: the slippery slope.

Consider what it means when a person becomes the treatment. It’s one thing to conceive a child whose umbilical cord can save a life without causing a whimper. But just how far can we go?

Is there a difference between conceiving a child for umbilical cord cells or bone marrow transplants, for a kidney or a lung? Do parents have the right to produce one child as a set of spare parts for another?

And just how eager or naive are we to enter the world of designer babies? On what grounds exactly should we be willing to pick and choose embryos? The petri-dish embryo that became Adam was genetically tested for its own health and its sister’s. But testing isn’t necessarily limited to lethal childhood diseases.

There are already clinics testing embryos for breast cancer genes. Do we want to screen out a disease that won’t click in for 40 years, if at all? And conversely do we want to choose "enhancement" genes — to pick children for height, hair color, musical ability?

"It’s not a science fiction, hypothetical, classroom exercise anymore," says ethicist Art Caplan. "We are going there. It’s only a question of when we get there."

Caplan has called the burgeoning, changing world of reproductive genetic technology the "Wild West" of medicine: "It’s a cash and carry revolution." This most intimate area of human life is also its least regulated. We only hear what doctors and patients have decided, bought and sold when we read about it in the paper.

Susan Wolf, a University of Minnesota professor of medicine and law calls this business "laissez-faire consumerism run riot."

And finally, it raises the question about parenting itself. "What do we value about kids?" asks Wolf. That they be disease-free? That they come with "perks"?

Parents have always had a host of motives for bearing children. If the Nashes’ motives were mixed, well, they were mixed with love. There is not a whiff of harm in that.

So on the day Molly received the gift of cells from Adam, she had her own uncomplicated explanation for visitors. "My brother’s going to give me some of his blood to make me feel better," she said.

I just wish it were all that simple.

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