Testifying before Congress in the spring of 1990, Arkansas state health director Joycelyn Elders took an unusual tack in her defense of legal abortion. "Abortion," she said, "has had an important, and positive, public- health effect," in that it has reduced "the number of children afflicted with severe defects." As evidence, the future surgeon general cited this statistic: "The number of Down's Syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion."
Her remark went all but unnoticed at the time and has received little attention since, even during Elders's contentious tenure as surgeon general in the Clinton administration. But it was a significant statement nonetheless, if only because it represents one of the few occasions on which a public health official has publicly acknowledged the eugenic utility of abortion. Terminating a pregnancy, Elders argued, is not simply a difficult personal decision, an agonizing last resort. When guided by public-health objectives, abortion can also be a positive act -- a means of improving the species.
Stylized and dulled by euphemism as it is, the debate over abortion in America rarely allows for statements as clear and direct as Elders's, and the words may sound almost unrecognizably harsh to ears accustomed to intentionally opaque terms such as "choice" and "life." But what Elders said is nothing new. For 30 years, nearly every element of Western medicine -- physicians, geneticists, insurance companies -- has, explicitly and not, encouraged the use of abortion to reduce the incidence of birth defects.
The effort has succeeded dramatically, particularly in the case of Down Syndrome, the most frequently occurring genetic disorder. Far more women now are able to detect Down Syndrome pregnancies, and far more end them with abortion. Yet even as it becomes easier and more common to prevent children with Down Syndrome from being born, the justification for doing so grows murkier.
Unlike many other genetic anomalies, such as Tay-Sachs and anencephaly, Down Syndrome (also known as Down's Syndrome or Trisomy 21) is not a terminal disorder. Children born with Down Syndrome are not vegetables, nor are their lives demonstrably not worth living. Indeed, advances in science and changes in public perception have combined to make Down Syndrome a relatively mild birth defect: The average child born with Down Syndrome in America today can expect to reside at home, go to school, learn to read, hold a job, and live to the age of 55. He will grow up cognizant of ethics and events, and will be mildly to moderately retarded, with an IQ of between 55 and 70. It is one of the triumphs of modern society that the life of the average person with Down Syndrome has become strikingly normal. Except that, unlike normal people, people with Down Syndrome have been targeted for elimination.
Of 22,000 women who received prenatal diagnosis in one 1990 study in Canada, 88 percent of those who found they were carrying a child with Down Syndrome aborted the fetus. Other studies have put the rate of Down Syndrome abortions at about 90 percent, some even higher.
Last year, British journalist Dominic Lawson published an article in the London Spectator about the birth of his daughter, who has Down Syndrome. Lawson, a self-described atheist, expressed outrage at the National Health Service's policy of providing free prenatal tests for, and complimentary abortions of, babies with Down Syndrome. He went on to compare the policy to the Nazi eugenics program. Lawson's article was reprinted in the Daily Mail, prompting scores of letters to the editor and counter articles. Partly in response to what Lawson had written, a bill was introduced in the House of Lords that would outlaw abortions conducted solely to prevent the birth of a child with Down Syndrome. (Currently, abortion of "seriously handicapped" children, including those with Down Syndrome, is legal in England through the ninth month.) A national debate has begun.
So far, no such public discussion has broken out in the United States, where amniocentesis and other genetic tests have been used to target Down Syndrome pregnancies for abortion since at least the late 1960s. In 1959, French geneticist Jerome Lejeune discovered that people with Down Syndrome have an extra chromosome responsible for the disorder. The discovery soon made it possible to detect the presence of Down Syndrome in utero. Grasping the implications of his work, Lejeune grew to be a passionate opponent of abortion and prenatal testing, which he called "biological pornography."
But Lejeune could not stop what he had unwittingly begun. By the summer of 1967, the American Medical Association had passed a resolution endorsing abortion in cases in which "an infant may be born with incapacitating physical deformity or mental deficiency." A year later, the American College of Obstetricians and Gynecologists came out with a similar policy. A number of states, years before Roe v. Wade, followed suit with laws allowing abortion for the purpose of eliminating children with mental defects, including Down Syndrome.
During the 1970s, genetic testing of pregnant women became routine, a practice encouraged by groups like Planned Parenthood. Since it is an invasive procedure that entails extracting amniotic fluid with a needle from around the child, amniocentesis (like its alternative, chorionic villous sampling) carries a significant risk of miscarriage, in some places as high as one in 100. As a result, the test generally has been reserved for use by women over the age of 34, who are more willing to weigh the risk against that of having a child with Down Syndrome. (The incidence of Down Syndrome increases with maternal age, from about one in 2,000 births at age 20 to one in 10 at age 49.) In 1984, however, it was discovered that a non-invasive blood test could be used to calculate the likelihood of bearing a Down Syndrome child. The blood test made it possible to provide screening for Down Syndrome to women of all ages at no risk to the mother. In 1986, the State of California began requiring physicians to offer the tests to pregnant women. The state's health department now funds much of the screening itself, spending $ 56 million a year to detect prenatal birth defects.
The rest of the country followed California's lead. Between 1988 and 1993, the number of pregnant women who received blood tests for Down Syndrome doubled, to about 2 million. Almost all the tests were covered by private health insurance or Medicaid. Last year, the American College of Obstetricians and Gynecologists officially recommended Down Syndrome screening for all pregnant women. Although there is no cure or prevention for Down Syndrome -- indeed, the only real intervention that can be taken after a positive test result is abortion -- prenatal screening is now, in effect, mandatory. Few physicians, regardless of their beliefs on the subject, are willing to risk not offering the test, for fear of being slapped with a " wrongful birth" suit if a handicapped child is born. It has happened, repeatedly.
The rapid growth of prenatal testing has had some undeniably positive effects: A woman who knows she will bear a child with a handicap can plan to deliver in a hospital equipped for risky births. And many couples prefer the opportunity to prepare psychologically for the work of raising a disabled child. By far the most profound effect of prenatal testing, however, has been a staggering increase in the number of abortions.
The trend is clear: More testing invariably leads to more -- many more -- abortions of Down Syndrome children. "Most women who have children with Down Syndrome did not have the amnio," says Lori Atkins of the National Down Syndrome Society, and there is growing evidence to indicate this is true. A study of data from selected states by the Centers for Disease Control found that the rate of Down Syndrome births to mothers 35 or older dropped by about a third between 1983 and 1990. Another study, conducted over a slightly longer period, pegged the decline at 46 percent.
Larry Edmunds, a CDC statistician who is among the country's acknowledged experts on birth-defect trends, cites data from the 1980s suggesting that abortion reduced the number of children with Down Syndrome born to white women over 35 in the metropolitan Atlanta area by about 70 percent. Of the 30 percent in that study who did bear children with Down Syndrome, Edmunds explains, "those were mainly women who didn't have the test." *