WSJ: A Brother's Survey Touches a Nerve In Abortion Fight

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Agonizing Choice

A Brother's Survey Touches a Nerve In Abortion Fight

Mothers Were Asked How They Found Out Their Babies Had Down Syndrome

Teaching His Sister to Read
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
October 3, 2005

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CAMBRIDGE, Mass. -- Earlier this year, Brian Skotko, a student at Harvard Medical School, published papers in two academic journals, based on a survey of more than 1,000 mothers. The survey asked an unusual question: How were they told that their child had Down syndrome? One woman said that after her baby was born in 2000, "the doctor flat out told my husband that this could have been prevented… at an earlier stage." Of 141 women who learned through prenatal testing, many said they felt urged to terminate the pregnancies. One said that after learning her amniocentesis results, the doctor told her "our child would never be able to read, write or count change."

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Researchers estimate there are more than 1,000 genetic tests available or in development that could be used for fetuses -- including ones for conditions that aren't life threatening, could be lessened by surgery, or don't appear until adulthood. Down syndrome is at the forefront of controversies surrounding the termination of fetuses with disabilities because in recent years medical, social and educational changes have dramatically improved the prospects for people with the condition.

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Lewis Holmes, an author of that study, says despite the high rate, he doesn't believe "the system is tilted toward termination of pregnancy." Dr. Holmes, director of genetic services at the Prenatal Diagnosis Center at Massachusetts General Hospital, says most doctors make "an enormous effort to make sure couples hear both sides." Deciding whether to continue such a pregnancy is a "personal, private agony," he says.

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A practicing Roman Catholic, Mr. Skotko says he personally opposes the termination of any pregnancy, except when the mother's life is in danger. But he doesn't advocate overturning Roe v. Wade, the Supreme Court decision which guaranteed the legal right to abortion. "We have decided as a society that termination is permitted until 24 weeks of pregnancy," he says. "I respect the law."

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Despite strides, people with Down syndrome still face many challenges, especially as they age. There is a shortage of independent-living facilities and job opportunities. Adults are at increased risk for a variety of medical problems, such as diabetes. This spring, after Mr. Skotko's articles were published -- in the American Journal of Obstetrics and Gynecology and in Pediatrics, another academic journal -- he started fielding calls from doctors, disability-rights groups and others. Some of his findings were posted on antiabortion Web sites.

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Write to Amy Dockser Marcus at [email protected]

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