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." *
Lewis Holmes, a professor of pediatrics at Harvard Medical School who works at Massachusetts General Hospital, says that in his experience, of women who learn they are carrying a Down Syndrome child, "90 percent will say they want to terminate. If you have all the technology available and educate the women as to what their choices are, that will happen."
Far fewer than 90 percent of women support abortion, at least in the abstract, so there is some question as to why so many are choosing it when they find they are carrying children with Down Syndrome. A number of studies have attempted to provide an answer. One, conducted by the Canadian Royal Commission on New Reproductive Technologies, found that, because of pressure from hospital staff, one in four pregnant women "felt obliged" to undergo amniocentesis. Of those who tested positive for a birth defect, one in three believed she was "more or less forced" to have an abortion.
Another study, published this summer in the British Medical Journal, describes the case of one pregnant woman whose child had tested positive for birth defects. Following her doctor's orders, she reported to the labor ward of her hospital for what the physician had termed an "induction." It dawned on the woman, who was five months pregnant, that the "induction" was in fact to be an abortion. Horrified, she returned home and later bore the child.
Laurie Cowan, a physician at the state of Delaware's public health department, readily admits that abortion has had a dramatic effect on births of children with Down Syndrome. "We are seeing a real drop in the rate of [Down Syndrome] children who are born. We're not seeing a drop in the rate of children who are conceived," she says. But like many in the medical profession, Cowan is wary of how such information might be used. Abortion, she explains, "has been a right that people have had. So I hope that in no way you'll do anything to try to take away that right. I'm just very concerned about that. I just hope in no way your work will undermine that." Antiabortion forces, she warns, would allow the procedure "only if the mother is raped, only if she's going to die because of this pregnancy. And that's uncomfortable for me because there are certain things that are pretty close to that."
Having a Down Syndrome child is close to being raped? To dying?
Why such eagerness to prevent Down Syndrome children from being born? Undoubtedly, some physicians are motivated by a belief that children with birth defects pollute the gene pool. "There is nothing wrong with eugenics," said Dr. F. Clarke Fraser, founder of the genetics clinic at Montreal Children's Hospital, not long ago in an unusually blunt interview with the Montreal Gazette.
Many others, however, simply view abortion and Down Syndrome as parts of an economic equation. Amniocentesis "may cost about $ 1,000, but a reasonably conservative estimate is that it costs $ 100,000 for just the first year of a Down Syndrome baby's life," explained Dr. Mark Evans, director of Detroit's Center for Fetal Diagnosis and Therapy. "How many people would I have to test to balance the lifetime cost?" he asked a New York Times reporter in what must rank among the creepiest rhetorical questions ever posed. 'And then there are economic considerations nobody knows how to factor in, like the number of women who would have to quit their careers to care for these babies. "
Actually, Dr. Evans was wrong on at least one count: A number of people have "factored in" the various costs of Down Syndrome. A 1995 study led by Norman Waitzman of the University of Utah sought to calculate the toll birth defects take on the American economy. The results, published in a CDC report, found that each child born with Down Syndrome will, over a lifetime, cost society about $ 451,000. The total cost for all children born with the disorder in a given year, the study determined, is $ 1.8 billion. " Particularly in these times of fiscal squeeze," he concluded, "these costs provide a vivid picture of the value of research and prevention" (italics added)
Needless to say, Waltzman failed to point out that, in the case of Down Syndrome, there's no way to "prevent" the disorder, only the birth of those afflicted with it. Obscured by euphemisms or not, calculations such as Waltzman's have not escaped the attention of insurance companies, many of which have proved indecorously eager to cover testing for potentially expensive genetic defects, most recently for cystic fibrosis.
Nachum Sicherman of the Columbia Business School, another researcher who has examined the "enormous cost-saving potential of amniocentesis," is the sort of expert insurance companies doubtless will consult as they begin to sort out the growing number of prenatal genetic tests in order to determine which ones they should pay for. Sicherman figures the cost to society over the lifetime of a person with Down Syndrome is at least $ 1 million -- most of which, he points out, "is not going to be paid by parents." Numbers like these -- and Sicherman's are larger than most -- have led Sicherman to recommend that amniocentesis be made available to all nearly pregnant women, regardless of age. "If you take all costs into account -- costs to school districts, to Medicare, Medicaid, Social Security, lost days of work for parents," he explains enthusiastically, "there is nothing more beneficial than amniocentesis, if it is given under the assumption that if Down Syndrome is discovered, there is an abortion following. It's a great cost saving."
Sicherman does more than simply theorize on the subject. "When my wife was pregnant," he recalls, "we went to Lamaze class and I asked the women there if they'd ever heard of amniocentesis." Being a mostly young and lower-income group, he says, none had, and Sicherman did his best to remedy their ignorance. It was, after all, only the right thing to do. "Everybody should tell their patients about amniocentesis," he says.
Sicherman's views may be a bit blunt for the present state of public opinion in America. Not so in the Netherlands, however, where subjecting pregnancy to rigorous economic calculation is considered a civic responsibility. A 1991 report by the Royal Dutch Society of Medicine (entitled "Life Terminating Actions with Incompetent Patients, Part I: Severely Handicapped Newborns") studied a series of 2,816 amniocenteses given to pregnant women. The tests resulted in 75 abortions, 57 of which were of " defective fetuses."
"These 2,816 amniocenteses and the chromosome analyses cost approximately $ 1.5 million," the study said. "This is in the same order of magnitude as the costs for taking care of one patient with Down's Syndrome in a medical institution for a period of 60 years. Seen in the light of a cost-benefit analysis the conclusion is obvious."
From here, it is a short trip to killing handicapped children outright. Why, after all, stop the economizing simply because a child has left the womb? James D. Watson, who won the Nobel prize for the discovery of DNA, believed that newborns who scored below a certain level on the APGAR test given immediately after birth should be euthanized.
In fact, infants with Down Syndrome are routinely starved to death in Dutch hospitals -- a practice that has been resoundingly affirmed by both that country's supreme court and its Council for Children's Protection. Nor are such practices restricted to the Netherlands. A 1975 poll found that 77 percent of American pediatric surgeons favored withholding food and medical treatment from infants with Down Syndrome and leaving them to die. Seven years later, in the well-publicized Baby Doe case, a Bloomington, Indiana, couple asked their doctor to do just that to their child born with Down Syndrome. The infant, who needed only simple surgery to correct a blocked esophagus, died after six days of neglect. In a strikingly similar incident several years later in Montreal, a Down Syndrome child died after 11 days without food or water. "The presence of Down Syndrome," said a local coroner, "was another element [in the decision to kill the child] since mongolism implies a quasi-vegetative life or severely diminished quality of life "
Given these stories and the evidence that an entire population of retarded people may be wiped clean from this country, one would expect organizations that represent the disabled to be up in arms.
One would expect wrong.
"We have a clear position not to take a position on the issue of abortion," says Paul Marchand, head lobbyist at The Arc (formerly known as the Association for Retarded Citizens), one of the country's largest such groups. The National Down Syndrome Congress, in its "Position Statement on Prenatal Testing and Eugenics," is equally explicit: "These positions . . . in no way involve the movement in the debate over whether a woman should have a legal right to abortion."
Disability groups tend to be on edge when it comes to public perceptions of the mentally retarded (Al Gore learned this the hard way when he referred to Oliver North's political supporters as "the extra-chromosome right wing," drawing roars of protest from Down Syndrome groups). They are quick to spot even the most subtle forms of discrimination -- The Arc actually has an official policy demanding equal access to dental treatment. So it is puzzling that so few groups have seen fit to comment on the growth of state-endorsed eugenics targeted -- in the most discriminatory, dehumanizing way imaginable - - at their own constituents. It's a little like the NAACP refusing to come out against slavery.
In 1978, the Delaware chapter of the Association for Retarded Citizens did take a position: It passed a resolution demanding that the federal government pay for abortions for poor women who learn they are carrying potential retarded citizens. The resolution prompted The Arc's national organization to convene a task force on the issue. After months of work, the group produced a 60-page report declaring that, although a majority of its members supported government funding for the abortion of retarded children, a unanimous decision could not be reached. And that, says lobbyist Marchand, was that: "I don't think anything on abortion has crossed my desk in the last ten years." The only comparable issue today, he says, is the debate within the " disability community" over whether it is valid to search for a cure for mental retardation. "It can be a touchy subject," he explains without a hint of irony, because when you seek a cure, "what you're doing de facto is devaluing people with mental retardation."
Not that The Arc spends a lot of time pondering existential questions like these. The group's real concern nowadays, says Marchand, is "the federal role in the future of mental retardation" -- i.e., getting more money from the government. He rattles off a list of programs his organization is lobbying to maintain and expand: Medicaid, Social Security, disability insurance, job training, special education. "We are extremely occupied with a myriad of federal policy issues that are before us," Marchand says. "Our plate is more than overflowing."
Meanwhile, as The Arc concerned itself with its "myriad of federal policy issues," another issue was being decided on Capitol Hill, one from which the voice of the disability lobby was noticeably absent: partial-birth abortion. The vast majority of Down Syndrome children identified in utero are diagnosed using amniocentesis, which is not even performed until the sixteenth week of pregnancy. The abortions that result are of the grisly variety, some of them performed by the skull-crushing partial-birth technique on infants capable of living outside the womb.
During the debate over the procedure, the Clinton administration cited the record of abortion doctor James McMahon as evidence that a ban on partialbirth abortions would be unacceptably rigid. The pregnant women McMahon had treated, the administration argued, had received abortions to alleviate the sort of "serious health problems" that should be exempted under the ban. And what were these problems? According to data the doctor himself provided to Congress, the single most common "serious fetal defect" McMahon " treated" was Down Syndrome.
It would be unfair to single out organized Down Syndrome groups for their unwillingness to confront the subject of abortion, since the willful blindness runs much deeper. In Life As We Know It, his recent book about raising a son with Down Syndrome, Michael Berube describes the typical response on an Internet discussion group when the subject of prenatal testing and abortion arises: "Every time someone brings up the question on the listserv, he or she is met with dozens of e-mail responses reading, "NO! NO! NOT ON THIS LIST! Please don't have this discussion here! There are plenty of other newsgroups for this debate. This is about children with disabilities.'"
Dr. Bill Cohen of the Down Syndrome Center of Western Pennsylvania, a noted authority on the disorder, has much the same response when asked about his views on abortion. "If someone comes to me and says that they're thinking about terminating the pregnancy, my job is not to convince them not to," he says. "This is not a right-to-life issue. This is a choice issue. This is an information issue. . . . It's hard enough to deal with any of these things without being made to feel on top of it that you've done something wrong."
Yet, it's difficult to shake the feeling that those who abort a child simply because he or she has Down Syndrome have done something wrong. Children with Down Syndrome are not monsters, but uncommonly gentle human beings who can and do lead full lives. And there are alternatives to abortion. "It's not at all difficult" to find homes for kids with Down Syndrome, says Janet Marchese of the Down Syndrome Adoption Exchange in White Plains, New York, one of several agencies of its kind in the United States. Over the past 20 years, Marchese has placed about 3,600 children with Down Syndrome; her waiting list of couples hoping to adopt rarely dips below 100.
What do people who would adopt a Down Syndrome child know that most obstetricians do not? "Having a child with Down Syndrome is not such a big deal -- if you have some experience with Down Syndrome you realize that," says Nancy Simpson of Chesapeake Down Syndrome Parent Group in Phoenix, Maryland, whose eight-year-old daughter has Down Syndrome. "It's definitely not as easy as raising a typical child; there are a lot of things that are involved in it. Raising a child with Down Syndrome takes extra patience and extra care and extra time. But you also get back a completely different perspective on the world, and a great deal of love."
Sentiments like these are almost unimaginable to Jeffrey Greenspoon, M.D. Greenspoon is the director of the high-risk obstetric unit at Cedars-Sinai Medical Center in Los Angeles. In the summer of 1995, during the beginning of the debate over partial-birth abortion, Greenspoon sent a letter to Rep. Henry Hyde passionately defending the procedure, especially in cases where a child might be born with "problems . . . incompatible with a normal life," such as Down Syndrome.
"A pregnancy that is desired and planned is the foundation for the next generation of productive, healthy Americans," Greenspoon wrote. "The burden of raising one or two abnormal children is realistically unbearable."
Reached at his office, Greenspoon admits that he approves of eugenics -- weeding out "babies who don't have much of a viable life." What makes him uncomfortable, he says, is the word "eugenics," which somehow has assumed " bad connotations over time. I think the better terms would be 'genetic counseling' and 'prenatal diagnosis' and 'having a country in which the option to exercise choice in whether to continue or terminate a pregnancy is a right of the people.'" After all, he says, "Sometimes you need to abandon words that have common meanings that connote the wrong ethics or morals."
But only the words have changed.
* There has never been a national study of the incidence of Down Syndrome. Surprisingly, however, what data there are indicate that the overall rate of Down Syndrome births -- about one in 1,000 -- has not declined appreciably in the last couple of decades. "It's a difficult epidemiology to sort out," says Larry Edmunds, but the most plausible explanation seems to be this: More women are aborting Down Syndrome children; on the other hand, more women are giving birth after 35, causing the total incidence of Down Syndrome to rise, by close to 50 percent, according to some estimates. So far, the two trends -- more abortions and older motherhood -- seem to have canceled each other out. This will change, most researchers seem to agree, as access to prenatal diagnosis reaches more older mothers, particularly those outside of urban centers, where the procedure is not yet as common.