Politically Correct Eugenics

It is a bitter irony that even as we are enlarging our commitment to human equality in many areas, we are turning our backs on it in others. In particular, we may be about to eliminate from our society people with Down syndrome (DS) and other genetically caused disabilities.

With the development of prenatal genetic diagnosis, the drive toward eugenics has returned with a vengeance. Americans may heartily cheer participants in the Special Olympics, but we abort some 90 percent of all gestating infants diagnosed with genetic disabilities such as DS, dwarfism, and spina bifida. Not only that, but a study published in the American Journal of Obstetrics and Gynecology in 2005 found that of the approximately 5,000 babies born with DS annually, only about 625 were born to mothers who knew of their baby’s condition before birth. Together, these figures suggest that under the regimen of universal prenatal genetic testing urged upon us by the American College of Obstetrics and Gynecology, the number of DS babies born each year could plummet below 1,000.

This is precisely the purpose of testing, many will say. But others see that attitude as a denial of universal human equality. Moreover, many worry that parents of genetically disabled children are nudged toward the abortion option, a choice they might not make if a fuller and fairer picture were presented to them. Indeed, parents of babies diagnosed prenatally with DS reported in the study mentioned above that 23 percent of the physicians or genetics counselors they spoke with either “emphasized the negative” aspects of parenting such children or “urged” parents to choose abortion. (This, in contrast to 14 percent who emphasized the positive possibilities or counseled in favor of continuing the pregnancy.) And even when prenatal counseling is truly neutral, parents may not receive the depth and breadth of information or the emotional support required for a fully informed decision.

To prevent parents from being subtly or expressly pushed in making decisions about their genetically disabled child, a strange pair of bedfellows—Senators Edward Kennedy and Sam Brownback—have coauthored the “Prenatally and Postnatally Diagnosed Condition Awareness Act” (S 1810), which just passed its first committee hurdle.

Kennedy’s adamant support for abortion rights infuriates pro-lifers, while Brownback is ardently pro-life, accused by paranoid liberals of harboring theocratic tendencies. Their disagreement about abortion notwithstanding, their bill would require parents faced with pre- and postnatal diagnoses of disability to receive “timely, scientific, and nondirective counseling about the conditions” as well as “up-to-date, comprehensive information about life expectancy, development potential, and quality of life” for a child born with Down syndrome or any other genetic disability, as well as “referrals to providers of key support services.” Their hope, clearly, is that when parents receive a more complete picture, more of them will welcome their disabled babies into the world.

The case of cystic fibrosis is suggestive. After a prenatal genetic test was recently developed to detect this disease, the number of CF live births in Massachusetts plunged by about 50 percent. No one knows why—no studies have been done. But if this drop is due to eugenic abortion, perhaps some of these children would have been carried to term if their parents had been required to be informed that great progress is being made and CF is no longer a certain early childhood death sentence.

Or imagine the potential impact on parents agonizing over whether to abort their DS baby if they were presented with testimony to the joy that many parents of Down children discover. British sportswriter Simon Barnes, for instance, recounted his experience in the Times of London. “If you find the idea of love uncomfortable,” Barnes wrote,

or sentimental or best-not-talked-about or existing only in the midst of a passionate love affair, then you will find problems with what I am writing. I am writing of love not as a matter of grand passions, or as high-falutin’ idealism, or as religion. I am writing about love as the stuff that makes the processes of human life happen: the love that moves the sun and other stars, which is also the love that makes the toast and other snacks. . . .

What is it like to have Down’s syndrome? How terrible is it? Is it terrible at all? It depends, I suppose, on how well loved you are. . . . I can’t say I’m glad that Eddie has Down’s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don’t want his essential nature changed. Good God, what a thought. It would be as much a denial of myself as a denial of my son. . . . I am here to tell you that Down’s syndrome is not an insupportable horror for either the sufferer or the parents. I’ll go further: human beings are not better off without Down’s syndrome.

A famous columnist once opined that only people who have the “moral authority” earned by hard experience should express opinions about such difficult matters. What Kennedy and Brownback hope to provide to parents of genetically disabled babies is the legal assurance that they will be provided information that is complete and informed—rather than counseling tainted by prejudice, ignorance, or fear. The Prenatally and Postnatally Diagnosed Condition Awareness Act may have a clunky name, but it is a noble and practical bill that deserves the support not only of those ideological opposites Kennedy and Brownback—but also of everybody in between.