Prenatal Testing for Genetic Disorders Dehumanizes All Who Have Disorders

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Author: Ramesh Ponnuru
Editor: Katherine Swarts
Date: 2009
Publisher: Greenhaven Press
Series: Opposing Viewpoints
Document Type: Viewpoint essay
Length: 2,815 words
Lexile Measure: 1040L

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Article Commentary

Ramesh Ponnuru, "Weeding Out the Unfit," The Human Life Review, vol. 32, Spring 2006, p. 29+. Copyright © 2006 Human Life Foundation, Incorporated. Reproduced by permission.

"One woman related that after her baby was born, 'the doctor flat out told my husband that this could have been prevented ... at an earlier stage.'"

In the following viewpoint, Ramesh Ponnuru argues that prenatal testing for genetic disorders expresses and encourages a longstanding—though now rarely openly admitted—attitude that an "imperfect" person is unfit to live. The same idea fueled the "eugenics" that, in the early twentieth century, promoted forced sterilization to head off the birth of "imbeciles" and "morons." Ponnuru, a senior editor for National Review, has published columns and articles in a number of prominent periodicals including Time, The Wall Street Journal, and the New York Times. This selection first appeared in his book Party of Death.

As you read, consider the following questions:

  1. According to Ponnuru, do more or fewer people favor abortion to prevent genetic disorders, than favor abortion in general?
  2. What prominent historical figure "condemned eighty-five million Americans as 'mediocre to imbecile'"?
  3. In 1982, an infant with Down syndrome died after his parents refused lifesaving surgery; by what name did that event come to be known?

In recent years, many Americans have become concerned that our schools "overtest" children. In truth, however, the first test to which they are subject comes long before school, and it's the highest-stakes test of all. We test our children in the womb and, depending on the results, decide whether they live or die.

The number of children in this country with Down syndrome, for example, has fallen over the last fifteen years. That's not because a cure has yet been found. The rising number of older women having babies should, indeed, have increased the prevalence of the syndrome. The reason for the drop is the increased use of "second-trimester screening." When people find out that they are having a child likely to have the syndrome, more than 80 percent of them opt to abort the baby. Prenatal testing is routine, and its point is less to prepare parents for the challenges of raising a disabled child, or to determine whether the baby needs medical treatment in the womb, than to determine whether to kill the baby. We abort most children with Down syndrome, or Tay-Sachs disease, or spina bifida, or cystic fibrosis. And we abort some children who don't have those conditions because the tests aren't foolproof.

Nasty Expectations

Parents of children with Down syndrome often report that they were encouraged to have an abortion or, what might be worse, simply expected to have one. (Just as parents are simply expected to have prenatal testing, even when that testing poses risks to the baby. Physicians who don't offer the tests might later find themselves facing a "wrongful birth" lawsuit—a kind of legal action that itself reflects the influence of abortion on our mores.) [Disability rights spokesperson] Beth Allard reported that an obstetrician had told her that her child might have the syndrome [he did—she had him anyway], and then explained what that meant. "It could just be hanging off of you, drooling," the doctor said, and then "contort[ed] her face into a saggy, expressionless imitation of what a child [with the syndrome] might look like."

A study released in 2005 found that a majority of mothers of children with Down syndrome reported that their doctors accentuated the negative, that many got out-of-date information about the trials of living with the condition, and that pressure to have an abortion was not uncommon.

Criticized for a Humane Decision

Parents also sometimes report that their decision not to abort elicits criticism, even from strangers. One woman related that after her baby was born, "the doctor flat out told my husband that this could have been prevented ... at an earlier stage." [Journalist and disability-rights advocate] Patricia Bauer wrote an op-ed about the phenomenon. "I see the way people look at [my daughter]: curious, surprised, sometimes wary, occasionally disapproving or alarmed."

At a dinner party not long ago, I was seated next to the director of an Ivy League ethics program. In answer to another guest's question, he said he believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure. (When I started to pipe up about our family's experience, he smiled politely and turned to the lady on his left.)
Margaret does not view her life as unremitting human suffering (although she is angry that I haven't bought her an iPod). She's consumed with more important things, like the performance of the Boston Red Sox in the playoffs and the dance she's going to this weekend. Oh sure, she wishes she could learn faster and had better math skills. So do I. But it doesn't ruin our day, much less our lives. It's the negative social attitudes that cause us to suffer.

Bauer's op-ed drew several letters decrying her as "sanctimonious."

Public Attitudes

Senators Sam Brownback and Ted Kennedy, a pro-life Republican and a famously pro-choice Democrat, are co-sponsoring a bill to provide funding so that doctors can provide parents with better information, including contact information for support groups for parents of children with congenital diseases or syndromes. It's a worthy effort.

But the testimony of parents such as Bauer suggests that our country now has a reasonably strong social norm that disabled babies should be aborted. This type of diversity we do not wish to tolerate.... Americans are much less supportive of abortion than is commonly thought. But no such claim can be made about abortion of the disabled. In every poll, Americans strongly support the right to abort them. [Bioethicist] Leon Kass, who has thought deeply about medical ethics for years, concludes, "We are largely unaware that we have, as a society, already embraced the eugenic principle, 'Defectives shall not be born,' because our practices are decentralized and because they operate not by coercion but by private reproductive choice." We are, however, occasionally given glimpses of the import of our choices.

The Alleged Public Health Benefits of Legal Abortion

When Joycelyn Elders was Governor Bill Clinton's surgeon general in Arkansas, she testified before Congress in favor of the Freedom of Choice Act. Abortion "has had an important and positive public-health impact," she said. It "has reduced the number of children afflicted with severe defects." She gave an example: "The number of Down's [sic] syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion." The remark did not keep her from being nominated by Clinton, a few years later [when he was president], to be the surgeon general of the United States, or from being confirmed.

We like to think that eugenics is a thing of the past, that it died in the ashes of Nazi Germany. Today's Supreme Court would not bless a forced sterilization with the words [on Oliver Wendell Holmes's opinion in the 1927 Supreme Court case Buck v. Bell], "Three generations of imbeciles are enough." (Also: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.")

Eugenics, Birth Control, and Abortion

Yet the history of eugenics is worth reflecting on, not least because the history of abortion cannot be divorced from it. Consider the case of Margaret Sanger, the founder of Planned Parenthood, who is still revered by it. While she herself opposed abortion, Planned Parenthood takes its support for it to be a straightforward extension of its support for birth control. And Sanger's crusade for birth control and "voluntary sterilization" was openly eugenicist.

She worried about the "increasing race of morons" in the United States, and complained that "a moron's vote" was just as good as that of his betters. She told the New York legislature that "the Jewish people and Italian families" were "filling the insane asylums" and "hospitals" and "feeble-minded institutions." Taxpayers were thus subsidizing the "multiplication of the unfit" when they should have been spending money "on geniuses." She condemned eighty-five million Americans as "mediocre to imbecile."

Lest we judge her too harshly, we should note that these sorts of sentiments were not unusual among the upper class and the intelligentsia in the first half of the last century. To take one example from hundreds: The New Republic editorialized in favor of contraception in a similar vein. "Few intelligent people would still maintain that it is better to have been born an imbecile than not to have been born at all." This "hideous doctrine," it continued, must be denounced "as a conspiracy by the superstitious against the race." The conspiracy resulted in "the multiplication of the unfit."

A Strange Idea of "Sacred"

This kind of thinking remained very much alive during the debate about abortion in the run-up to Roe [v. Wade (1973), the court case that legalized abortion]. The respected scientist Ashley Montagu wrote:

If life is sacred ... then it is about time we began treating it as such, instead of continuing to commit the frightful tragedies we do in permitting individuals to be brought into the world who will suffer all the days of their lives from seriously disabling defects ... The initial basic right of the individual should be to be born without handicap. Anyone who, in the light of the facts, assists in bringing a seriously handicapped child into the world in my view commits a crime against humanity.
Abortion could prevent that "crime."

A similar view was expressed by [geneticist and columnist] Bentley Glass in his 1971 presidential address to the American Association for the Advancement of Science. Defending "the right of every child to be born with a sound physical and mental constitution, based on a sound genotype," he looked forward to a "future time" when "[n]o parents will ... have a right to burden society with a malformed or a mentally incompetent child."

The Eugenic Mindset

Traces, and more than traces, of the old eugenics live on in current attitudes and practices. The eugenic mindset has spread since Roe. It can be seen in the popularity of Freakonomics [a book of economic commentaries by Steven D. Levitt] and its speculations about abortion and crime. It can also be seen in the selective abortion of those whom we no longer label, but obviously still consider, the unfit.

We frown on abortion for the purpose of sex selection (although we don't prohibit it and it would be hard to do so while keeping abortion generally legal), in part because we think it expresses a negative view of women. We don't seem to have that worry about people with disabilities.

Health is a basic human good. It is perfectly understandable that disabilities should frighten (and sometimes even disgust) us. We might look at a disabled person and, comparing his condition to our own health, believe we wouldn't "want to live that way." This is especially true if we have more fears than knowledge about what life with a disability entails. Almost every parent of a disabled child would wish that his child not have a disability or that a cure be found. We are right to value health, but not by devaluing the unhealthy. Notice the way our language sometimes slips into identifying a person with his affliction, as in Elders's reference to "Down's syndrome infants." (We wouldn't call someone a "breast cancer woman.") The medical project should be to make people better, not to make better people.

Better Prospects for People with Down Syndrome

The improved condition of people with Down syndrome over the last few decades complicates both sides of the debate. Such people—at least those whom we allow to live—have better prospects than ever before. Their life expectancies have risen, and most of them can learn to read and hold a job (contrary to what some pregnant women are told). Our society treats disabled children and adults, in general, better than it used to, outside the contexts of abortion and euthanasia. So the worst pro-life fears about the dehumanization of the disabled have not been realized. It may be, of course, that our treatment of disabled children and adults would be even better if we did not routinely kill disabled fetuses in the womb.

But the same trends also make our treatment of disabled fetuses, in a way, more alarming. Down syndrome isn't a terminal illness, although it is a difficult (and expensive) condition. Yet we consider it something to be stamped out in the womb. We don't even protest at the starvation of infants who have it. In the "Baby Doe" case of 1982, a baby boy was born in Indiana with Down syndrome and a common symptom of that syndrome, an improperly formed esophagus. The boy's parents decided against surgery to fix the esophagus, opting instead to give him painkillers and let him die of starvation. The [Ronald] Reagan administration sought to intervene but was turned aside. It later promulgated regulations to ensure that babies receive medical care, but courts struck them down. Perhaps some future society, no doubt with its own smugness and its own sins, will condemn our barbarity.

Gifts or Commodities?

Or perhaps our eugenic tendencies will grow even stronger. One danger is that we will come to see children less as gifts than as products of manufacture. The commodification of human life is almost upon us: The biotech industry is looking at patenting early-stage human organisms pursuant to stem-cell research. Will we grow less and less tolerant of what we see as defective goods? Will we abort children who are deaf, or blind, or dumb, or short, or gay? How will the health and insurance industries treat us if we don't? How will our neighbors—or the strangers that we meet?

All over this country, there are people sitting in seminars at think tanks, colleges, and working groups, pondering these questions as though they concern the future. But these evils already exist, in embryonic form, today. Just ask Patricia Bauer. Or listen to Joycelyn Elders.

Doctors and Abortion

The party of death [the Democrats] has corrupted the practice of medicine, turning healers into killers. Bernard Nathanson made that journey, and returned.

Nathanson was one of the founders of the National Association for Repeal of Abortion Laws. In the 1970s, he directed what was at the time the largest abortion clinic in the world, the Center for Reproductive and Sexual Health in Manhattan. He performed, he says, "many thousands" of abortions.

It was not a religious conversion, but technological and scientific advances, that changed his mind. His thinking about abortion, like that of many other people, was powerfully affected by the development of ultrasound technology. "When ultrasound in the early 1970s confronted me with the sight of the embryo in the womb, I simply lost my faith in abortion on demand," he later wrote. He was, at the time, an atheist.

It was not only the images that swayed him, but the new understanding of fetal development that ultrasound made possible. "As recently as [1969], we knew almost nothing of the fetus; when abortion on demand was unleashed in the United States, fetology essentially did not exist."

A Close Look at the Violence

Nathanson went on to become a pro-life author, speaker, and documentary producer. His 1985 film The Silent Scream is misremembered today. It was not primarily an attempt to prove that abortion inflicts pain on a fetus (exactly when the fetus develops to the point of feeling pain is still a disputed question). It was a depiction of the violence of abortion.

By 1984 ... I had begun to ask myself more questions about abortion: What actually goes on in an abortion? I had done many, but abortion is a blind procedure. The doctor does not see what he is doing. He puts an instrument into a uterus and he turns on a motor, and a suction machine goes on and something is vacuumed out; it ends up as a little pile of meat in a gauze bag. I wanted to know what happened, so in 1984 I said to a friend of mine, who was doing fifteen or maybe twenty abortions a day, "Look, do me a favor, Jay. Next Saturday, when you are doing all these abortions, put an ultrasound device on the mother and tape it for me."
He did, and when he looked at the tapes with me in an editing studio, he was so affected that he never did another abortion.

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