Mon, Jun 21, 2004 - Page 16 News List

To be or not to be born

Genetic tests are now routinely used to diagnose diseases in fetus, leading to a kind of grassroots eugenics, as parents decide whether to abort or not

NY TIMES NEWS SERVICE , NEW YORK

Kate Hoffman at home, in Massachusetts. Hoffman and her husband ended a pregnancy after tests showed a high risk of Down syndrome, she is pregnant again.

PHOTO: NY TIMES

Lying in the darkened doctor's office, Kate Hoffman stared at the image of the 11-week-old fetus inside her on the ultrasound screen, a tiny ghost with a big head. It would have been so sweet, Hoffman said, if something had not been so clearly wrong.

Hoffman's first three children had been healthy and she was sure this one would be, too. She was not planning to have the amniocentesis procedure often used to test for fetal health problems, preferring to avoid even the slightest risk that the insertion of a needle into her uterus would cause her to miscarry.

But when her doctor told her there was a new way to assess the chance of certain abnormalities with no risk of miscarriage -- a blood test and special sonogram -- she happily made an appointment.

The result, signaling that the child had a high chance of having Down syndrome, thrust Hoffman and her husband into a growing group of prospective parents who have learned far more about the health of their fetus than was possible even three years ago.

Fetal genetic tests are now routinely used to diagnose diseases as well known as cystic fibrosis and as obscure as fragile X, a form of mental retardation. High-resolution sonograms can detect life-threatening defects like brain cysts as well as treatable conditions like a small hole in the heart or a cleft palate sooner and more reliably than previous generations of the technology. And the risk of Down syndrome, one of the most common birth defects, can be reliably assessed in the first trimester rather than waiting for a second-trimester blood test or amniocentesis.

Most couples say they are both profoundly grateful for the information and hugely burdened by the choices it forces them to make. The availability of tests earlier in pregnancy means that if they opt for an abortion it can be safer and less public.

But first they must decide: What defect, if any, is reason enough to end a pregnancy that was very much wanted? Shortened limbs that could be partly treated with growth hormones? What about a life expectancy of only a few months? What about 30 years? Or a 20 percent chance of mental retardation?

Decision time

Striving to be neutral, doctors and genetic counselors flood patients with scientific data, leaving them alone for the hard conversations about the ethics of abortion and how having a child with a particular disease or disability would affect them and their families. There are few traditions to turn to and rarely anyone around who has confronted a similar dilemma.

Against the backdrop of a bitter national divide on abortion, couples are devising their own very private scales for weighing whether to continue their pregnancies. Often, political or religious beliefs end up being put aside, trumped by personal feelings. And even many of those who have no doubts about their decision to terminate say the grief is lasting.

"It was never even anything I had considered until I had the bad results," said Hoffman, who ended her pregnancy last year after a followup test confirmed that her child, if it survived, would have Down syndrome. "It was the hardest decision I ever had to make."

She and her husband, Drew, of Marblehead, Massachusetts, decided that the quality of the child's life -- and that of the rest of their family -- would be too severely compromised. "I don't look at it as though I had an abortion, even though that is technically what it is," she added. "There's a difference. I wanted this baby."

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